A 2017 National Labour Force Survey cited 21 million working age people with disabilities in Indonesia. The University of Indonesia states PwDs are 4.2 per cent of the population.
Millions of tourists flock to Bali every year making it one of Indonesia’s most inclusive islands. But it can be an extremely difficult place for the 34,801 disabled Balinese.
BALI, Indonesia – The island’s most iconic peak is Mount Agung, home of the most sacred Balinese Hindu temple Besakih.
In 2017, Mount Agung erupted forcing over 70,000 people living near the volcano into evacuation centres in east Bali – one of the island’s poorest areas. One hundred and ten of them were people with disabilities.
For four months all displaced Balinese lived in makeshift camps, away from their homes, farms and livelihoods.
In February 2017, Indonesia’s Centre for Volcanology and Geological Disaster Hazard Mitigation lowered Mount Agung’s alert status from level 4 – its highest in over 50 years – to level 3. This meant all but 2,536 of the most vulnerable evacuees could return home.
Despite this move, volcanologists predict Mount Agung could have a major eruption at any moment. All but eight people with disabilities inside the evacuation centres were allowed to leave. Even with a reduced strain on resources, life is still a challenge for those inside.
Kadek Durma looks uncomfortable as he sits and waits on his sleeping mat for his younger brother to return to the evacuation centre and carry him to the toilet.
Durma, aged 25 years, is mentally disabled. His mother Nengah Deden, aged 67 years, brought him to the evacuation centre last September before the volcano’s eruption with the help of others from Kesimpar village, located on the slopes of Mount Agung.
Deden said most days her son, Durma, waits so long, his stomach tightens and pain turns his smile into a grimace.
“We need a wheelchair so I can take him to the toilet when he needs to go,” Deden said, as she crossed his legs into a comfortable seated position.
In 2016, the government passed a law detailing the obligation to fulfil the rights of people with disabilities in accordance with the UN Convention on the Rights for Persons with Disabilities. Indonesia’s government has yet to implement any public policy change regarding this new law.
Indonesia’s Ministry of Social Affairs states it is strengthening the coordination among ministries to implement the 2016 law on disabilities, and it encourages local governments to make its own regulations related to disability.
People with disabilities face discrimination. According to traditional beliefs, it is a common perception among Indonesians that people become disabled because of past sins, either committed by the individual or the family.
“Most Indonesians believe it’s a kind of punishment if a family member is disabled. Many aren’t allowed to leave home, go to school, or find work,” said Pak Latra, founder of Puspadi Bali, an organization providing quality rehabilitation, education and training and advocacy programs for people with disabilities.
Seventy five per cent of the NGO’s staff has a disability, including Latra.
“Our goal and mission is to collect data from each village so we can learn how many more people with disabilities exist. The reality today is many families are embarrassed and feel ashamed to admit a member of their family has a disability. But slowly it’s getting better,” said Nyoman Wenten, head of division at Bali’s social services department.
Wenten said his department works with the Ministry of Social Affairs in Jakarta to address the needs of people with disabilities. A vocational training program exists to allow people with disabilities in Bali, often deprived of education because of stigma, to receive employable skills.
Mount Agung erupted in November 2017. 70,610 Balinese living inside the evacuation zone were relocated to 240 evacuation centres in east Bali. Today, only 52 evacuation centres remain operational. One hundred and two people with disabilities have returned to their homes in villages near the volcano.
Narrow roads up to these mountainous villages and a lack of reliable transportation for people with disabilities makes evacuation in an emergency extremely difficult. But for those who’ve chosen to remain at the evacuation centres, life isn’t much easier.
Deden and her son Durma have been sleeping on the floor in a communal area at Agriculture Technical Implementation Unit Shelter, once sheltering 1,328 evacuees but now only 465 remain – including four people with disabilities – in east Bali’s Rendang district of Karangasem Regency.
“I can’t move him myself. He’s too big. I’m too old,” Deden said. “Nobody around here helps me, so he must wait for his brother to return at night from work.”
There are no mobility aids or assistance devices such as wheelchairs, crutches or walking sticks available. This leaves people with disabilities unable to move unless someone carries them – making them reliant on others for basic tasks.
“Wheelchairs cost as much as motorbikes in Indonesia. This makes it impossible for most people to afford one,” said Irwanto, founder of the Center for Disability Studies at the University of Indonesia. He’s currently a professor in the Department of Psychology at Atma Jaya Catholic University of Indonesia.
Irwanto has used a wheelchair for 14 years. He lives in the capital, Jakarta, and is the author of Making Disability Rights Real in Southeast Asia. Irwanto criticized Indonesia’s government for being slow in implementing the new law to improve the lives of Indonesians with disabilities.
Puspadi Bali has filled this gap, left by the government, and has distributed 1,870 wheelchairs and other assistive devices over the last 10 years. But Latra admits the need is great.
Mobility is the biggest issue for Deden, Durma and three elderly people with disabilities at this evacuation centre. Like in their villages, here nothing is constructed with disability in mind.
Wayan Gatri, 93, sits on the floor propped up by the doorframe of a former storage room. She is paralyzed from the waist down.
“I must wait for my great grandson to return from work at night to carry me to the toilet,” Gatri said. “I don’t have a wheelchair and my great granddaughter can’t carry me.”
Gatri was first displaced by Mount Agung’s 1963 eruption. She remembers it quite vividly. “It suddenly erupted. And you could see the fire coming from the top of the mountain. The sound was very loud,” she said excitedly.
At the time, Gatri spent five months in an evacuation centre with her husband and two children. But she knows she’ll be here much longer, already surpassing the five month mark since she was evacuated.
Now Gatri is solely reliant on family to tend to her at home and in the evacuation centre. Her great grandson told her the home and farm has been covered by thick volcanic ash since last November’s eruption.
This has caused her a great amount of stress because she misses the smell of her durian and dragon fruit.
“I don’t like here. I prefer to choose going back home. But it is not safe for me to return,” she added. “I don’t want to be a burden on others here.” Agriculture and animal husbandry is a livelihood for all Balinese living inside the evacuation centre.
February 10, the Centre for Volcanology and Geological Hazard Mitigation lowered the evacuation zone radius from eight to four kilometres allowing tens of thousands of evacuees to return to their homes and farms. It said the decision was made because of the volcano’s reduced activity.
Three days later, Mount Agung sent columns of volcanic ash into the sky.
The last time the evacuation zone radius was lowered in January 2017, one thousand evacuees returned home. This was done to reduce the strain on resources. Twenty centres were closed, so more attention could be focused on the 220 other centres remaining open.
But all 110 people with disabilities remained inside the evacuation centres until February when most were given the option to leave and took it.
Despite the lowering of Mount Agung’s threat level, a major eruption could happen at any moment. British journalist Simon Winchester writes in his 2003 book Krakatoa The Day the World Exploded:
“Indonesia, itself, has and has had more volcanoes and more volcanic activity than any other political entity on the earth, in all recorded history. It is a country that is defined by its place at the heart of a subduction zone and is essentially made up of volcanoes and precious little else.”
Improving mobility and accessibility for the eight people with disabilities and inside all the 52 remaining evacuation centres is the most pressing concern for Latra and Puspadi Bali.
“Nothing about us without us,” Latra said. This is the mantra for inclusivity. Latra and Irwanto believe people with disabilities must be included in decision-making regarding their health and livelihoods.
“I think accessibility is very important,” Irwanto said. “But to change peoples’ minds and to change how people see and treat those with disabilities, that needs time. There needs to be more education and advocacy work.”
The reality is a household containing a family member with a disability in Indonesia is three times more likely to live in poverty than a household without. The 2014 University of Indonesia study Persons with Disabilities in Indonesia goes on to state “people with disabilities were 30 to 50 per cent more likely to be poor than non disabled people, especially in urban areas.”
The only way to address the high rates of poverty for people with disabilities is through government policies prioritizing access to education, employment and health services.
Irwanto said a good start would be for the Indonesia government to provide people with disabilities national health insurance coverage.
“They say because of pre-existing conditions, we are not able to receive coverage,” Irwanto said. He added that medication, prosthetics and assistive devices are a huge cost to people with disabilities and, if covered, could help them go to school or work.
“It remains important to educate our public officials and, especially policy makers and community leaders on the situation and conditions of Indonesia’s people with disabilities,” Irwanto said. “We need to promote the ‘ability paradigm’ to counter the ‘deficit paradigm’ that was engendered in the previous law and is still in the minds of people today. Public policy should start with ‘accessibility first’ in all public services –including school and health facilities.”
Back at the evacuation centre, Deden, Durma and Gatri are resigned to wait for assistance. All their lives they’ve done the same and nothing has changed. Around them roosters still crow, birds still chirp, and children still play.
But they don’t want to be a burden on others in the evacuation centre. They ask for access to a wheelchair to improve their mobility around the facility. In the case of another emergency they don’t want to rely on family and friends to evacuate them to safety. Next time they feel they may be forgotten.