Decades of conflict and violence have left thousands of people across Northern Uganda facing the life-changing problem of major limb loss (MLL). Alongside wounds caused by firearms and mines, mutilation and punishment amputation were a devastating reality of the war in Northern Uganda.
After surviving these catastrophic injuries, many have little or no access to prosthetic limb services. An interdisciplinary team at The University of Manchester has been working in the region to make a difference to the lives of those affected.
Life-changing injuries
Losing a limb can be the beginning of a downward spiral for conflict survivors, with the impact of their injury shaping many aspects of their lives. With manual labour a prevalent source of income in Northern Uganda, many MLL survivors are exposed to poverty after their amputation.
Other health and wellbeing issues can follow, too. “In addition to psychological trauma, these patients are prone to secondary health issues such as high blood pressure, post-traumatic stress disorder and depression,” says Professor Mahesh Nirmalan, leader of the project and Vice Dean for Social Responsibility in the Faculty of Biology, Medicine and Health.
“Their self-image is damaged, which leaves them vulnerable to addiction, alcoholism and domestic violence.”
Understanding the size of the problem In collaboration with the University of Gulu, the team delivered an extensive public and patient engagement programme to gain insight into the community’s experience of MLL.
“Within that population, we needed to find out how many people needed prosthetic limbs as a result of the war,” Professor Nirmalan says.
This proved to be a challenging task due to the fact that much of the population inhabit rural, unmapped areas across the Acholi region. The team used geographical information systems and machine learning to create maps of the settlements in the area.
“We had to understand how the population was distributed because there was very little data and no usable maps of that part of Uganda,” explains Dr Jonny Huck, Senior Lecturer in Geographical Information Science. “Our research revealed that approximately 12,000 people were in need of prosthetic legs in Gulu and the surrounding areas.”
Poverty and poor transport links prevented many of those people from accessing existing prosthetic limb clinics. It was clear that a different approach was required for those living in remote villages.
Taking inspiration from the outreach prosthetic limb service model of the Maththa Foundation charity, the team were able to fit more than 50 people with lightweight prosthetic limbs. These had been specifically designed for Uganda’s rough terrain.
This work gives disabled people a voice in the presence of senior government officials.
Tackling discrimination
However, urgent action was needed to address another challenge: discrimination.
“When we spoke to disabled people, they identified stigma as the biggest challenge they face, rather than the physical aspect of losing a limb,” explains Ruth Daniel, CEO of global performing arts organisation In Place of War and Project Manager in the School of Social Sciences. “Most
people said they had considered suicide because of being outcast.”
In Place of War specialises in developing creative opportunities for marginalised people affected by violence around the world. Working with local performers in Gulu, they delivered a series of forum-theatre performances to challenge negative perceptions surrounding disability.
“People’s perception of disability changed,” says Ruth. “The plays were derived from the actors’ real experiences and the performances engaged thousands of people in a dialogue about discrimination.”
Far-reaching impact
Thanks to the project, conversations about disability have started to take place much further afield.
“This work helps to address inequalities because it gives disabled people a voice in the presence of senior government officials,” Professor Nirmalan says. “For policymakers, it has given greater prominence to the issue of chronic disability. It has highlighted the pressing need for more effective services to support disabled people across Uganda.”
Other aspects of life were also improved for the Gulu community. The bespoke maps have now been used to support the delivery of a separate cervical screening programme and to assist with the installation of mobile data connections for 23 medical centres and 200 schools.
“The impact reaches far beyond the individuals who received prosthetic limbs,” notes Dr Huck.
International teamwork
With contributions from specialists in medicine, humanities, materials sciences and performing arts, collaboration was the engine that powered the project’s success.
Ruth says: “Without the skills and local knowledge of our partners in Gulu, we wouldn’t have been able to negotiate with community leaders or arrange theatre performances to ultimately challenge discrimination within these communities.”
The project sparked further collaborations around MLL. Sri Lankan researchers went to Uganda to better understand the specific healthcare challenges and Ugandan technicians visited Sri Lanka to receive specialist prosthetic-limb materials training.
“Each partner has contributed their unique skills to the project’s success; each side has benefitted from the sharing of knowledge and innovation”, says Professor Nirmalan.
Looking forward, he believes that continuing such vital work by the team and academic colleagues doing similar work in the UK will be increasingly challenging, following the reduction in funding for the overseas aid budget recently announced by the UK government following the pandemic.
“Disability in post-conflict settings is a complex issue; we needed a diverse, highly skilled team to identify multifaceted solutions to address the problems facing MLL survivors in Gulu,” he concludes.
“Interdisciplinary research and social responsibility go hand in hand. That’s what it takes to achieve meaningful change.”
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