Importance of community

This article is taken from Livability International‘s blog, featuring the great work of Stephen and Maggie Muldoon in Nepal at the Spinal Injury Rehabilitation Centre (SIRC) and in Bangladesh at the Centre for the Rehabilitation of the Paralysed (CRP).

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

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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.

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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.

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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.

About Kate Coffey

After 25+ years in the investment management industry, I packed in my job and spent 2014 living and working in Nepal and Bangladesh, and visited some other places in between. It took me on a journey I did not expect, had me fall in love with Nepal and it's people, and become inspired at the work of Spinal Injury Rehabilitation Centre (SIRC) located 2 hours east of Kathmandu in the Sanga foothills. Since 2014, I have continued my warm relationship with SIRC and worked closely with my friends there in the aftermath of the 2015 earthquakes to date. This blog initially started out as a travelogue of sorts to keep friends and family worldwide updated while I was off on my travels in 2014. Since then it has morphed into a life story of the many places I have lived and worked and of the wonderful people I have met along the way. I hope you enjoy.
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6 Responses to Importance of community

  1. Mick Canning says:

    It is interesting that the article mentions a stigma, with the suggestion of punishment because of a wrongdoing in a past life; the majority of people I have met who believe in reincarnation would say that we would all have made bad decisions in past lives, and the consequences may happen at any time in the future, so that whatever the current state of a soul/person is no real reflection of their true self (sorry, is that a bit convoluted?).

    • Kate Coffey says:

      Hi Mick, thanks for your comments. Having lived in Nepal and also having many Asian friends, in that culture there is definitely an element of disgrace when one is hit with a significant health issue.

      I know of parents who disowned their daughter when she was diagnosed with cancer here in Vancouver, so it is not limited to developing countries.

      I have seen with my own eyes the reaction to those with any form of disability in Nepal, so the stigma is very real for those with disabilities.

      I like your friends’ idea where the current state of a person/soul is no reflection of the true authentic self that is alive and kicking, irrespective of how the outer wrap we call our body has manifested.

      • Mick Canning says:

        That is unbelievably sad about the daughter with cancer in Vancouver.
        On a slightly different note, I was part of the support taking a group with disabilities trekking in Nepal, 20 years ago. We did attract a huge amount of attention wherever we went. A Nepali I spoke to told me it was partly because most people in Nepal would not expect to see those with disabilities out in the wider community, so the fact that we were from the wet made us rather a circus attraction.

      • Kate Coffey says:

        I bet! I was involved in Ram’s Wheelchair Yaatra in 2014 (lots written about it on this blog) with the primary aim of raising SCI awareness and how wheelchair users live big and are capable of doing anything – including a 360km wheelchair yaatra on Nepali roads. Ram’s such an inspiring young man.

        Would be interested to see pictures/the story behind that trip 20 years ago, that’s pretty aweseome!

      • Mick Canning says:

        Unfortunately, I only have a few trek photos, since I had to return to Kathmandu with the chap I was supporting as he did not adjust to the altitude. I have some fairly decent ones of the group white water rafting later, though. I’ll see what I can do!

      • Kate Coffey says:

        Look forward to them

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