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When welfare support is minimal – community has to kick in. Responding to spinal injury overseas

Stephen Muldoon is no stranger to spinal injury. Travelling the world for over 20 years with his wife Maggie, they have been project leads in providing Livability spinal rehabilitation training and capacity building to communities in Bangladesh and Nepal. He talked to Livability about why strong family and community relationships are essential in rebuilding lives following an injury.

The risk of spinal injury in low-income countries

Sustaining a spinal injury in a developing country can have a devastating impact on someone’s livelihood and community integration. In countries like Nepal and Bangladesh, spinal injuries can be prevalent and often the result of low-paid and subsistence work, such as harvesting mangoes from treetops or collecting firewood from steep hillsides.

During the recent earthquake in Nepal in 2015, it was mainly the poorer sections of the population who were affected, with around 12% of the 14,000 injured in the quake suffering spinal damage leading to permanent disabilities.

Family and community support is vital

“Support from family and community play an important role in the recovery of any injured individual. But in low-income countries their input is vital,” says Stephen. Family members form a key component in the care of spinal injury sufferers from an early stage, and training them to do this is essential.

That’s why Livability advice and support overseas is so important. Livability is a key partner to the Centre for Rehabilitation for the Paralysed (CRP) in Bangladesh and its partner organisation, the Spinal Injury Rehabilitation Centre (SIRC) in Nepal. Both are providing key support to train family members provide the necessary care.

Patients in therapy at the Spinal Injury Rehabilitation Centre (SIRC) in Nepal.

Growing peer-to-peer support for rehabilitation

Family is an intrinsic part of the care of spinal injury patients. But Stephen believes that this must not create a dependency either. Families must support the spinally injured person to be as self-sufficient as possible. “Creating an independent mind-set is always part of our care package, so that the injured person is enabled to do as much for themselves as possible.”

Connecting people in a peer support scheme helps with this. “We have developed a ‘holistic’ approach to rehabilitation which encourages patients to support each other. This ‘peer-to-peer’ support can be crucial, providing patients with role models, acting as an alternative to psychological support and helping to deal with trauma and the impact of paralysis. We have also developed training in specific techniques to enable people with spinal cord injuries to become peer counsellors.”

Growing awareness, shifting attitudes for disability internationally

Over the years, Stephen has seen people with disabilities experience exclusion – especially in more rural communities. But he feels that this is starting to change. “Over the past 20 years, I have noticed a marked change in attitudes towards people with disability. There is still a stigma attached to disability itself – the belief, for example, that it could be a punishment for a wrongdoing in one’s past. Traditionally, attending school or getting a job were not expected. However, the stigma is steadily being eroded. This is partly due to the rise in the number of disabled people getting out there and living active lives.”

Change is also being driven by the Disabled People’s User Led Organisations (DPULOS), who are exerting their rights. Backed up by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), these organisations have undoubtedly contributed to improved attitudes.

Former patients showcase a dance routine at SIRC in Nepal

With minimal state welfare – community has to kick in

Stephen feels that there is still much we can learn from traditional communities. Because of the lack of welfare – which creates a ‘safety net’ in more affluent societies – a cohesive community continues to be vital to successful rehabilitation. “There is a great sense of collective support, compensating for the lack of ambulances and adapted housing. The whole community, as well as the immediate family, are mobilised to help.”

Along with other like-minded organisations, Livability works to increase opportunities for people with spinal cord injuries to live fulfilling lives in their own communities. “We are constantly looking at how we can get people with spinal injuries back into an active and dignified life in the community. By returning to their communities, people have a much better chance of survival and a fuller life after injury.”

“Part of our work is the active promotion of a return to former employment. Although this can sometimes be extremely difficult, especially for agricultural workers, we try to find ways to re-skill a spouse or family carer to operate a small business from the home. When someone is employed or socially active there are less complications, less depression.”

“It all boils down to how we are making the community livable for the spinally injured person to continue their life. This is very much what our work is and has always been about.”

Livability delivers international support and expertise to both CRP in Bangladesh and SIRC in Nepal, providing training and rehabilitation services to patients and project workers. Following the Nepal earthquake in 2015, Livability also launched an emergency appeal to support the projects.

To support the work of Livability overseas, visit our Nepal Urgent Care and Rehabilitation Appeal.

Watch our new film ‘Why is community so important?’

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