By Jane Sowerby
I’ve been aware of the amazing work that the charity Motivation do for some time, and when the opportunity to be involved with a project of theirs in Malawi came up, I was excited to take part.
My African adventure didn’t get off to a great start unfortunately - although I arrived safely in Blantyre airport, my wheelchair did not join me, as someone decided it should stay in Kenya! However, it quickly became clear why Malawi is referred to as the ‘warm heart of Africa’; the airport staff and Motivation team could not have been more helpful, really trying to make sure the situation was resolved as soon as possible.
As it was, I had to make do with a wheelchair loaned by the airport for a day or so. This was pretty challenging - I struggled to balance as it didn’t fit properly, my feet didn’t stay on the footplates, transfers were difficult due to the extremely high arm rests, and there was only one push-rim and one properly functioning front castor. It gave me a real insight into what many people have to deal with in Africa following a spinal cord injury, and they have to deal with it for much longer than a day or so. Those are the ones lucky enough to get a wheelchair at all.
Myself and another trainer were there to run the ‘Training of Trainers’ camp. The aim was to train ten new trainers so they can teach ‘Peer Group Training’ sessions on healthcare, wheelchair skills and disability rights to people with a spinal cord injury. We all stayed together in a lodge; which gave me a chance to get to know people from all kinds of different backgrounds and hear their fascinating stories.
The one common message from all the new trainers was what a huge impact the Motivation Peer Group Training had had on their lives. I learned that this training can be literally life saving, as well as life changing.
It was overwhelming to realise just how lucky we are in the UK and the US after a spinal cord injury, something definitely taken for granted by most of us. The majority of people at home are transferred to a specialist spinal injuries hospital following an injury, and have access to education and equipment during rehabilitation. Now, in the UK, the life expectancy of a paraplegic is no different to an able-bodied person. In Malawi, the life expectancy of a paraplegic is two years. Two years! What makes this statistic even more appalling, is that it could be so easily avoided. The majority of people die from infections, but with more education these cases could be dramatically reduced.
Some of the people on the camp hadn’t even initially been told that they had a spinal cord injury, or that damage in complete injuries is permanent. One person said that when being discharged, his doctor had told him to just go home and ‘wait until you can walk again’. He then got shipped around various churches with people trying to heal him with prayer. The first time he learned that his paralysis is permanent was on the Peer Group Training, he could then accept his situation and begin to move on.
Lack of understanding on the basic issues of spinal cord injury has huge implications on quality of life. Most participants said they hadn’t been told anything about bladder and bowel management, so were too scared to leave the house. Add the lack of education on skin care to the situation, and it’s hardly surprising that infections from pressure sores as well as bladder infections are common. Left untreated, these can be life threatening.
If I was shocked by the healthcare elements, I was perhaps even less prepared to learn about attitudes to disability in Africa. The worst I have to deal with in the UK is some staring and occasional ignorant comments. In Malawi, I was told that wheelchair users are treated like beggars. One lady even had people in her village call her ‘peasant’. Several of the participants said friends and even family had abandoned them. A disabled person is not considered to be worthy of much in society.
Trying to change these attitudes may seem like an overwhelming prospect, but if we can just start with a few of the wheelchair users that attend these Motivation camps, they can go on to challenge perceptions. The disability rights session talks about how a disabled person has as much right as the next person to be happy, have a family, get a job and generally be treated with respect. Environmental issues play a big part in disabling you further; I understand there are some groups now campaigning to improve building access etc to reduce these impacts. It does sound like things are beginning to change for the better.
Most of my expertise lies in wheelchair skills, so I was keen to see if I could help. This had to begin with getting an understanding for what the living situation was like for people, along with the terrain they had to deal with. I talked to many of the participants at great length to gather this information; the main feedback I got was that the wheelchair provided by Motivation had absolutely and completely transformed their quality of life. The more suitable wheelchairs meant it was easier to strive towards a goal of being independent; the skills we then teach improve confidence to help achieve this goal.
Skills such as how to push up ramps, get over obstacles, ascend and descend steps will mean that some of the challenges encountered everyday can be overcome. Many of the participants who had already been on the Peer Group Training camp talked about how much the skills learned had improved their confidence and independence. They were more willing to leave the house and integrate back into their community, because getting around was much easier.
However, I witnessed how much harder people have to work to achieve this independence. Culturally, it is common for people to want to push wheelchair users. Even after a successful wheelchair skills session where participants had overcome barriers independently, a family member would come and push them back to their room. Despite trying to get the message across that you should only push a wheelchair user if they ask for help, not before, I felt like the message was falling on deaf ears. One lady said she had asked her family members many times not to push her around, but they still did it regardless. The more wheelchair users that are seen out and about in their communities pushing themselves independently, the more this attitude will change.
I felt very privileged during the second half of my time with Motivation to watch our new trainers teach a variety of sessions on the Peer Group Training camp. They had begun to truly believe that they are role models, and that their achievements could inspire others. I witnessed first-hand what an incredibly positive impact this had on the participants of the PGT camp.
Although Motivation are making huge strides in improving the quality of life for many disabled people in Malawi, there must be a large number who have not yet been reached. This will undoubtedly be a big challenge for Motivation, but one I’m convinced they’ll work hard to overcome. I can only hope to be involved again at some point in the future to help them achieve greater goals.