Sunday 5 June 2022

Blog 50: Halfway

I have now been in Lesotho six months since my arrival on December 3rd, 2021, and I am halfway through the year I said I would spend in Lesotho working with children with disabilities. Somehow this has also corresponded with blog 50, which seems like an auspicious coincidence. As I face my first winter in Lesotho, I have been reflecting on what has been achieved so far and how best to spend the next six months.

 

This visit has been different to my other visits in many ways. Firstly, the length of time. Previously the longest I have spent here is three months, sandwiched between working for the NHS, with barely time to pause before turning around and going home again. More time certainly gives you a better chance to develop projects, relationships and make project work more sustainable. 

 

Having funding and a collaboration with the Canadian Foundation, Glasswaters, has also helped support the project and help it grow. Glasswaters have supported my expenses here, as well as administration and equipment costs for the project and paid for workers on the ground. 

I have trained Thato and Ntseliseng on previous visits and online, enabling me to keep in touch with while at home and now work with them in Lesotho. This has allowed the work to be more sustainable and continuous, rather than trying to pick up the pieces of where I left off like on previous visits.   

 

The focus of the work has also been different. Previously I have worked at two children’s centres where I set up physiotherapy rooms, trained staff, brought in equipment from the UK and was able to see large numbers of children every day and progress exercise programs and not have to travel anywhere. Now the work is focused on the physiotherapy and outreach program, (POP), training families, lots of travelling and making and buying assistive devices locally. Educating and empowering families has meant the work has proved more sustainable than previously, but I do less hands-on physiotherapy and the work comes with its own challenges.  

 

Most of the outreach work has been working with families belonging to the Mo-Rate Cerebral Palsy group. An organisation of mothers with children with cerebral palsy with over 150 families registered and spread throughout Lesotho. Throughout December I reviewed the Mo-Rate children that the team had already assessed and was working with in the Maseru district. I did online training with the team through covid lockdown in 2020, using the Multi-Agency International Training and Support (MAITS) program. They used this program to provide families with education and advice on how to best support their children and improve their health and independence. Many of these children were at the higher spectrum of disability, living at home with parents and carers who often had little idea on how to handle their children or care for their needs. Sometimes parents believed they had been cursed and had hidden their children away.   


What I found when reviewing this work was that the team had provided invaluable support and advice to carers in terms of basic nutrition, feeding positions, postural support, hygiene, stretches and suggestions for cognitive stimulation using information provided by the MAITS program. As always when working with families some parents had responded more positively than others, but for the most part the team’s advice and suggestions had empowered the parents to make a positive impact on the health and quality of life of the children. I was impressed with the work Thato and Ntseliseng had done, the relationships they had established with the families and the progress the children had made. 

 

For the last six months I have been based on the outskirts of the capital Maseru, living with my co-worker’s mother-in-law, just a few minutes down the road from Saint Angela children’s centre, and the local and the local primary and secondary schools which they attend. This has proved convenient, but intense at times. Poor relations with the management at Saint Angela and child protection issues have meant it has been no longer practical to use the physiotherapy room I set up at Saint Angela in 2016 or run physiotherapy sessions there. The lack of physiotherapy has been to the detriment of the children’s health and well-being. 

 

The problems of using Saint Angela as a base have been overcome by seeing the children at the local primary and secondary schools and seeing their families through the outreach program. We have assessed the children at school and run general physiotherapy sessions and floor football to raise the children’s levels of fitness for those that attend the primary school. We have also given out two assistive paper technology chairs to students with cerebral palsy to support their seating during school time and help them focus on their studies, along with two new wheelchairs and upcycled another wheelchair. 

 

After giving out a new wheelchair to Marsela last week, to her great joy her and her teachers, I took back her old wheelchair which belongs Saint Angela. I knocked on Sister’s door, greeted her, and explained that I have given Marsela a new wheelchair and I am returning the old one. Sister looked up from her desk,

“I need a wheelchair too” she says petulantly. There is a pause and a clatter as my jaw drops on the floor. Recovering I say

“Oh why?” 

“I am disabled now, and I need one to get around”. She says it without grace and I absorb this statement along with my memories of her on my last couple of courtesy calls here when she was murdering, plucking, and boiling some of the hundreds of wretched chickens that reside at Saint Angela, and my conversation with one of the boys that live at the centre who she boxed around the ears so viciously when he missed church, that his head was ringing for weeks. 

“This is all I have” I say pushing Marsela’s tiny, battered wheelchair towards Sisters substantial girth. 

 

I leave, I will never understand that woman’s bitterness and cruelty. Fortunately, the local school principals have proved much kinder and easier to work with. As well as the regular sessions at the primary school, I visit the high school regularly and have given out wheelchairs and crutches to children who attend there and live at Saint Angela. The high school has assisted with the recycling of wheelchairs and are interested in building an Appropriate Paper Technology (APT) workshop/physio room/clinic to be run by the teachers and pupils. With all the children with disabilities that attend the high school it would be a very sustainable project but would need to find a substantial amount of funding. Another project for the future … 

 

Before I came to Lesotho, I had knowledge of APT projects in low-income countries providing specialised furniture for children with disabilities using recycled carboard, but I had no practical experience of how to make it. After watching some online videos and buying a book I had some weeks of experiential learning with Thato, and we produced our first prototype chair in January. 

 

We have now produced a dozen chairs which has made a real difference to the ability of children to sit up, use their hands, improve their posture, core strength, and socialise. We have found the chairs particularly useful for those children with children with cerebral palsy who have the type with uncontrolled movements, dyskinesia. Bespoke chairs enable the children to “fix” themselves and help reduce their uncontrolled movements. We introduced two chairs into school to help a couple of girls with this condition which has benefitted their schoolwork and concentration.   

 

The achievement of producing this furniture has been even more remarkable since we have not had a proper workshop space to produce it in. Fortunately, we have been able to use the garage and a couple of rooms in a building of the guest house where I have been staying. Several incidents of low back pain were necessary to realise we would benefit from buying a table so we could stand up and work and measure and cut out the pieces needed to make the chairs. We have also invested in some tools and equipment that which have improved our work and efficiency. These factors, together with experience and the accumulation of our skills have improved the final product and enhanced the accessories we are able offer clients.

 

Acquiring the skills to make APT furniture and seeing the effect of it on children’s lives has been one of the highlights of this first six months. At home I order equipment through reps who demonstrate and adjust assistive technology according to the needs of the client. Making the furniture myself has made me more acutely aware of how I need to adapt the furniture to the client’s needs without the ease of the press of a button. Getting it right and seeing how it benefits the children has been of great personnel satisfaction.

 

Providing wheelchairs for children I have known for years and finally seeing them in something that fits, is comfortable and increases their independence has been another highlight of these last six months. Thanks to the generosity of donations and fund raising at home I have been able to go to South Africa and buy six new wheelchairs for children and upcycle another three. Knowing the positive impact on their physical health, mobility and well-being has been very gratifying, especially as all but one of these children are from Saint Angela and I regularly see the improvement it has made on their daily lives as they use the wheelchairs to go to and from school. 

 

In addition to the APT and wheelchair projects, working with the schools and Mo-Rate CP children I have added my professional expertise to the project and taken the opportunity to advocate for children with disabilities both at grassroots level and national level through stakeholder meetings. I am proud of what the project has achieved so far. It’s a relatively low budget project with a big impact, touching the lives of dozens of families and children and making a real difference to the quality of their lives and the physical and social environments in which they live. 

 

I now feel I have reached a point where I feel I have achieved the major objectives I set out to do in the Maseru district, and although there is still plenty of work here, I feel the team here can continue to develop it without me, and my skills would now be better used in a new district. I am hoping to finish outstanding pieces of work in Maseru over next few weeks before moving to a new district by the end of June. 

 

The last six months have been a rollercoaster of emotions, highs and lows, despair and joy, frustration and satisfaction. Getting a car at the end of January not only helped the project logistics but has also enabled me to get out in the mountains and access the great natural beauty of this country and restore dwindling energy supplies when it’s all got too much. It has not been all sunshine and unicorns but that was never going to be the case. The most important thing is that the project has made a real improvement to children with disabilities in Lesotho and their families and hopefully the next six months will bring me further opportunities to enhance the work that POP is doing out here. 

 

Thanks to everyone back home that have supported me and thanks to everyone that has backed the project in so many ways, I could not have done it without you.