I Ketut Gigir lives with his family in a basic home made out of brick and natural resources in a remote, impoverished part of Karangasem in East Bali, surrounded by fruit trees, poultry, pigs and cattle.
In 1985, Ketut Gigir became paraylysed after falling out of a tree, which forced him to learn how to adjust to a dramatically different way of life.
Since that time, he has been using a wheelchair within the confines of his home, and sadly, not venturing out into the street or in his village.
Indonesia has the world’s largest population and 11 million of its people have a disability (which is 4.5% of the entire population).
Ketut Gigir is one of 150 people with a disability in Bali who has agreed to take part in the world-first Wheelchair User’s Voice Pilot Study, over the next three months. UCP Wheels for Humanity has partnered with local organisations PUSPADI Bali and UGM to execute the project.
A team has been in the field attaching sensors to wheelchairs to collect data on the impact of an appropriate wheelchair to a user’s quality of life and how they’re utilised by people with a disability in developing countries.
WUV data collectors have also started doing face-to-face interviews with Ketut Gigir and others to gather detailed information about their background, lives and how they use their wheelchairs. Information from the questionnaires is then analysed and forms part of the full study (set to start later this year).
Sensors are being attached to the wheels of six different types of wheelchairs in Bali. They are activated by motion so once they move, they will continually collect data on durability, performance, distance traveled and other factors. High-quality data will be transmitted back to the GUV cloud platform and the team will also continually track changes in the users’ independence, health, and overall quality-of-life impact.
Data will also soon be collected by a monthly SMS survey with the wheelchair users involved in the project. After the completion of the pilot study, the 15-month research project will begin.
Ketut Gigir is one of the study’s 150 participants who has received a new wheelchair, as part of the project.
“I’m happy to be part of the project…my wheelchair helps me to work (making Balinese offerings) and do more things by myself,” he said.
The study is unique in that it is combining a comparative wheelchair evaluation (interviewing and collecting data from 150 people with disabilities in Bali who’ve received new wheelchairs and involved in the study), as well as interviewing 60 wheelchair users who aren’t receiving new wheelchairs for further comprehensive mapping research.
Life doesn’t end with a disability and PUSPADI Bali empowers an increasing number of people it supports to reach their full potential, through its rehabilitation, education and training and empowerment programs.
However, the reality for many people living with disabilities in underprivileged areas of Bali and in developing countries, is that it’s extremely difficult to have their voice heard and access quality rehabilitation, health and other support services (i.e. finding and being fitted with a proper wheelchair, prosthetic, orthotic or mobility aid).
It’s a key reason why the pilot study is crucial, because “it gives us the opportunity to analyse the social, health and economic impact as well as the wheelchair usage and quality,” Dr Karen Reyes, a wheelchair user, from UCP Wheels for Humanity said.
PUSPADI Bali is filling a vital gap in disability support on the island but considerable work has to be done at a higher level to boost the quality of services and support provided to local people with disabilities (i.e. provision of wheelchairs and mobility aids as well as quality healthcare).
Government officials, policy makers, NGOs and other organisations need to start and continually seek the voice of people with a disability in important decision-making as well as on issues that involve them.
“Ultimately this research is about bringing the wheelchair user’s voice to the forefront in policy and philanthropy decisions as well as moving away from the massive volume donation, one-size-fits-all thinking. We will demonstrate with real facts that an appropriate wheelchair is a difference maker by boosting participation and inclusion for people with a disability,” she said.
Over the next few weeks, the project’s focus is on wheelchair distribution and data collection. After the pilot study finishes, all the methodology will be revised and analysed before the full study begins.