Aidex Voices

An estimated 70 million people worldwide need a wheelchair for basic mobility and as many as 95% of these children and adults do not have one. This limits their independence, their economic and educational opportunities, and their ability to participate in their communities.

In the past, governments or NGOs wishing to donate or provide assistive technology (AT) products like wheelchairs, were challenged by the complexities of sourcing and shipping, often facing issues of limited supply and long delays. To solve the procurement and supply issue, UCP Wheels for Humanity - a non-profit organisation that increases access to mobility for people with disabilities living in low and middle income countries, created CLASP (Consolidating Logistics for Assistive Technology Supply and Provision). Funded by USAID, CLASP centralises and transports AT products from multiple manufacturers worldwide from its warehouse in Shanghai, China.

To ensure that CLASP is stocking the most appropriate wheelchairs and AT products, purchasing decisions will, in part, be informed using data from a far-reaching funded research project called Wheelchair User’s Voice (WUV). WUV is studying people with disabilities in Indonesia and Nicaragua, gathering information from data loggers fitted to wheelchairs, SMS and user feedback. By analysing the data, WUV aims to open new windows to understanding the best ways to serve wheelchair users. Correlations will be made between users who receive service consistent with the World Health Organisation’s 8 Steps and users who receive minimal service. There will also be comparisons between high and low quality wheelchairs. The research is expected to reach completion by December, 2018.

As UCP Wheels Director of Social Enterprises, Keoke King, points out, “One size wheelchair definitely does not fit all. Poorly fitted wheelchairs can cause more harm than good, increasing the chances of pressure ulcers, and muscular and skeletal problems.”

"Informed buyers want to make evidence-based choices to increase the impact of their funding and ensure they’re purchasing AT that really benefits the user. But developing countries rarely have data on the performance and usage of wheelchairs provided by donors, aid agencies, and governments to low-income individuals.”

“From the data, we expect to learn about the impact of an appropriate wheelchair in regards to the user’s quality of life, health, independence and social integration,” Keoke explains.

“Wheelchair quality, durability and good fit impact economic factors both for the user and for governments. For users, economic factors include total cost of ownership, and losses or gains related to the stability of access to work or school. For governments, economic factors include frequency of wheelchair replacement and hospital costs related to secondary injuries and deformities. Real mobility reduces barriers to inclusion, and maximises opportunities for people to study, earn a living and exercise human rights.”

Case study: Puspadi Bali

Two people taking part in the WUV pilot study are Reni and Pariawan.

Reni is swiftly and easily moving around in her new wheelchair, as she sweeps the fallen leaves and chats with her family outside their traditional Balinese home and temple in Abiansemal in the Badung regency.

After enduring years of big, second-hand and ill-fitting wheelchairs, this is Reni’s third and most comfortable chair. Before that, Reni used a crutch, moved about on her hands or crawled.

Reni’s new wheelchair was given to her as part of the Wheelchair User’s Voice project. “This is my very first own wheelchair, made for me – I can do almost everything I want in it and it makes my life easy,” she says. “I am very happy to be in this study so I can help others get the right wheelchair.”

Pariawan repairs shoes and carves wooden Pinocchio dolls, masks or bird cages, which he sells throughout his community. He sits on the floor of his work space as he meticulously carves each wooden object, and uses his wheelchair to move between each room in his home.

Describing his wheelchair, “as his leg and without it, I can’t move around,” Pariwan explains the importance it has to his life. “The wheelchair gives me mobility and without it, I can’t go anywhere and would be stuck inside my house,” he says.

Reni and Pariawan’s experiences illustrate one of the key motivators behind the Wheelchair User’s Voice project - placing choice back in the hands of people with a disability. By putting people with disabilities at the forefront of policy and philanthropy decisions, important personal decisions about the mobility aids they use aren’t dictated by other people or organisations - no matter how well-meaning those intentions may be.