Dropping the ‘Dis’: Seeing the ‘Ability’ in ‘Disability’
by Feby Ramadhani
While more than three million tourists visit Bali — the ‘Island of Gods’ — every year to party, surf and spend thousands of dollars on luxury, almost none are aware of this fact: there are still huge numbers of people living in areas of extreme poverty. And more so, many of these people live in increased poverty and isolation due to their physical or mental disability.
This is a story about some people with disabilities I recently met in Karangasem, one of the poorest and most remote regions in Bali. It’s an encouraging story about ability in a situation of disability.
In Indonesia, people with disabilities or differently abled people (difable — as some Indonesians would say) still face enormous barriers. Not only are they denied fair treatment at almost every level, access to government services, job opportunities, basic needs, religious or cultural ceremony to name a few — there’s still a strong social stigma that they have to bear in their everyday life.
In Karangasem, there are over 1,100 people living with physical disabilities. With very little government or social support, families of the physically disabled are left with the task of developing solutions to the many implications that follow. For many it is extremely difficult to access — let alone pay for— the support their difable loved ones need, like mobility aids or physical rehabilitation. For this circumstantial reason, combined with religious and cultural considerations, it’s not uncommon for difable people to be abandoned by their families, either being hidden or locked away from the world.
But strangely, I’m not very surprised by this practice. We are a nation of many faiths and our faith is very much a part of who we are as people. For example, based on popular Hindu beliefs, Balinese families often perceive mental and physical disabilities as being the result of ‘a curse from the Gods for having committed sins in the past.’ And there are thousands of cases like this from many different superstitions and belief systems all across the country and it only deepens the social exclusion of difable people. However, this heart-breaking practice has changed over time. With consistent education to break down these religious and cultural falsehoods, people are now more open-minded and understand that disabilities are not due to God’s curse but to genetics, disease or accidents.
Besides tackling these big issues, there are other basic needs that these people need to access. And one of them is universal for all seven billion people in the world — differently abled or not — the access to clean water. The difference is that for people with disabilities who live in isolated villages, like Karangasem, it’s just that much harder to access water. Wells and other water sources are often not physically accessible for them. Buying clean water is not an option because with few or no job opportunities they usually cannot afford it.
PUSPADI Bali (Centre for Empowerment of People with Disabilities) recognised the need for solutions to this major issue. They are an organisation dedicated to improving the quality of life of people with physical disabilities throughout Bali. I Nengah Latra, a native of Karangasem, is the founder of PUSPADI Bali. In 1986, Latra suffered a tragic accident from a kerosene explosion, which fused his arm to his torso. To date, PUSPADI has empowered more than 3,800 difabled people who mostly come from poverty-stricken areas like Karangasem.
For me, this organisation stands out because 85% of the staff have some type of disabilities. During my visit to Karangasem with PUSPADI, I was able to see all the amazing work they do and was fortunate enough to spend time with one of the staff members, Pak Dharma.
Pak Dharma became physically disabled 22 years ago. He experienced an accident in 1994, where his right leg was smashed by a big steel. He admitted that he had his darkest, lowest days after the accident. But, after he met PUSPADI Bali, he gained his confidence and self-esteem back through their counsel. He’s one of the many staff that travel everyday to the most remote areas of Bali on a scooter to visit people living with disabilities. PUSPADI aims to help them live better lives by providing them with mobility equipments, counselling, and access to job opportunities.
So, in early January 2016, PUSPADI Bali partnered with the organisation that I proudly work for, Kopernik — who connect simple technologies like water filters to the people in remote areas. The project was called Drink Up Karangasem, Bali and unlike any of Kopernik’s other ‘Drink-Up’ projects, this one was special. Why? Because this time, we were distributing the filters specifically to people who live with disabilities. For them, this can mean increased savings for already stretched individuals and families. And more so, it can improve their safety. Imagine the difficulty of collecting water from a water source, shifting it to the stove to boil it, then moving that boiling water to a dispenser…all without the use of your full body.
So, take a look at a glimpse of the lives of 38-year-old Nyoman Sri Nawa and 42-year-old I Made Darma Putra to understand the challenges they have faced with their disabilities and how they can now finally see their abilities.
Ten years ago, Nyoman was a person without any physical disabilities. His daily life was spent climbing coconut trees. He made a steady income from collecting coconuts to sell at the market. But this work is dangerous, especially without the use of safety equipment like ropes.
And on one fine day, the worst scenario happened. Nyoman accidentally fell out of the tree. Luckily he was still alive when help arrived and he had the chance to survive this tragic accident. Only now he is partially paralysed for life.
To this day, Nyoman gets around his village, Abang, in Karangasem in a wheelchair with very limited mobility. Most of the time, he has the support of his uncle and brother to help him with his daily needs. But Nyoman no longer has a steady income. But, PUSPADI did help him to find some work. He’s a part-time shoe repairman and orders are few and far between. “I don’t get shoe orders very often, so besides repairing shoes, I weave and plait palm leaves for banten (Hindu offerings). People will come to me and buy the banten and that’s where I get my income.” But even with constant shoe repair orders, Nyoman normally only makes around Rp.300,000–400,000 (around US$22–29) per-month. That means, the highest sum of money he will receive in one year is around US$350, equal to one night staying in a luxury villa in Bali!
In 2010, PUSPADI mobilised 23 of their international volunteers to work alongside Nyoman’s family to modify his house to allow Nyoman greater mobility and improved living conditions. They built a ramp around the house, because without this he would be forced to stay inside until somebody could help him get out.
And this year through Kopernik’s Drink-Up Karangasem project, Nyoman also received a water filter. After using it for just one month, Nyoman felt like his daily tasks of collecting, boiling and moving water around got a lot easier. “This water filter is easy to use. The tap water in this area is also very clean, so I don’t need to clean the filter very often,” he said.
For Nyoman, he believes that PUSPADI has been very kind to him for giving him the assistance he needed.
“These wonderful people from PUSPADI are always there when I need them the most. They lifted my self-esteem up, and I am no longer ashamed of sharing intimate details about my disability with people,” Nyoman shared.
The same gratitude for PUSPADI’s and Kopernik’s assistance comes also from I Made Darma Putra or Darma — as he would like to be called.
Similar to Nyoman, Darma fell ten meters from a jackfruit tree causing permanent partial paralysis of his body. While initially he received sufficient physical rehabilitation in Denpasar, the costs very quickly became too hard for his family to bear. Sadly, his brother decided to stop the rehab and brought him home to Karangasem, far away from such rehabilitation services. And just when he thought he had already reached the lowest point in his life things got even worse. His wife left him to marry another man because she couldn’t stand the shame of having a husband with physical disabilities and was mentally tired of taking care of him.
But for Darma now, there is so much more to life than just dwelling on the past. PUSPADI also helped to improve his house to allow easier mobility.
He can earn an income by bottling and selling fuel and also weaving palm leaves for banten. He lives with his daughter and son in a house with a small shrine to pray, large garden and interestingly, they have a big well to collect rainwater!
Something at the corner of the house caught my eye, and it was a display of silver and gold medals, hung on the wall.
The medals belong to Oktha, Darma’s eldest daughter. Later, I found out that she’s a wall-climbing champion. I was so surprised to hear that she enjoys challenging (and possibly dangerous) sports like this! But she has won five different competitions in the span of 2 years. When I asked about how her father feels when she’s climbing, she told me a heartfelt story:
“Once I fell down during a practice for a competition and injured my leg. I came home to my father being angry at me because I was reckless. He told me to just quit climbing and stop going into practices ... I guess he is just very scared that I will fall and end up like him (physically disabled).”
Despite her father’s warning, she continued to go to practices. And one day, Oktha came home with a medal in her hand. She convinced her father that she can do her hobby safely and that he wouldn’t have to worry about her falling. “It’s her passion, after all. I can only hope that she will be careful and get back home safely,” Darma said.
Darma, also a recipient of a water filter through the Drink Up Karangasem project, explained “Not many people know that rainwater is actually very clean and fresh…when we can, we use the rainwater we collect in our well in the water filter”.
But there is something different with how Darma uses his water filter. He had made a fantastic custom table for the water filter to sit on to allow easier access! “Sometimes, I have nothing to do when I’m at home. When I’m bored, I make things. This table is one of the best things I’ve ever made!” he said.
He further explained, “The water filter eases our daily chores. Previously, I had to undergo an exhausting, repetitive, inefficient process to collect water and prepare it to drink. There are three of us inside the house and water supply reduces quickly! When we received this filter, the process was shortened and we can enjoy the clean water straight out of it!”
So, what’s next for Darma and his family? “I wish to send my daughter, Oktha, to nursing school and pay off all my debts to the banjar (Bali’s traditional neighbourhood system). If everything goes well as planned, I can live peacefully,” Darma said as he chuckled to himself.
I consider myself very fortunate to have discovered this side of Bali.
I saw that the lives of both Nyoman and Darma are no longer defined by their disability. Through the support of organisations like PUSPADI Bali and Kopernik, they can live their lives just like everybody else and can be valued members of their families and the wider community around them.
“There are many things I can do, and there are some things that I can’t do,” said Darma, “but I can still be useful if there is an opportunity.”
For me, Nyoman and Darma are shining examples of how difable people are breaking through some very deep-seated barriers in this country and proving that life can be better. Life focused on what they can do and not what they can’t. Life focused on their abilities.
If you enjoyed reading this, please support by hitting that little green heart!
Kopernik connects simple, life-changing technology with the people who need it the most. We’ve reached more than 330,000 people to date. Head to Kopernik in Action for more stories like this.
If you’d like to send one (or more) simple technology to the people who will need them the most, visit our available projects.
If you want to know more about PUSPADI Bali, visit their website.
Worth reading: The House with the Million Dollar View