Sunday 12 December 2021

Blog 42: Battle with the Witches

The boy is lying on his back on the floor of the small house, his elbows and wrists flexed, his eyes unseeing. I click my fingers by his ears and there is no response. I lightly stoke his cheek and his hand moves towards it, sensitive to my touch. When I pick him up his small misshapen head reveals the source of his immediate problems, he has microcephaly. His brain has never developed properly, and he has severe learning difficulties.  

Thato questions the lady who cares for him. The mother has sent him to live with his grandmother and pays for the carer to look after him. The carer has been told to keep him indoors and not take him outside, she doesn’t know why. He is 8 years old, and she feeds him with soft food, while sitting him on her lap, apart from that he spends his life lying on the mattress. I ask to take him outside and sit with him on a plastic chair in the warm sunshine. Grandma appears and can barely walk, hobbling with a crutch in one hand and a stout stick in the other. The helper gets grandma a chair and she sits alongside while I gently massage her grandsons’ hands, fingers, legs, and feet. 

 

Thato explains about the importance of touch, and the emotional needs of someone who has little sensory input, the importance of sunshine and vitamin D and the chance to feel the wind on your cheek and experience the world through what senses are available to you. The boys muscle tone drops, his arms and legs relax a little. The carer puts him on her lap and together with grandma they both try a little massage. At one point the boy smiles, it’s not clear at what, but some caring human contact must be a good thing for a person locked in a world of darkness and silence. It’s another day in Lesotho on the physiotherapy outreach program visiting children with disabilities in the community, where health resources are few, disability carries a heavy stigma and there are more questions than answers 

 

This is not the first child we have found hidden away as I review how the team has been getting on since I was last here in March 2020. In a country where disability is often associated with witchcraft, concealing children with disability is commonplace. The disability equality act was passed earlier this year in Lesotho but has yet to have any real meaning in terms of practical resources on the ground. How it overcomes the shame and fear surrounding disability is another question. Meanwhile we try to be advocates for people with a disability at every opportunity, educating families and carers and empowering them with knowledge to help care for their children.

 

The next child we see is also living with his grandparents. The grandfather is convinced the boys disability is a result of witchcraft as both his daughters have children with cerebral palsy, which can be no coincidence, and must mean they have been cursed. The boy is two and as bright as a button. He is diplegic, meaning his legs have high muscle tone and he bunny hops across the ground on the mats we have placed on the muddy ground. It’s at least 28 degrees and at last someone brings an umbrella out to shade us from the powerful sun. I make a mental note to add an umbrella to my future kit list. 

 

I think with the right exercises done consistently this boy might be able to use crutches when he is older. Physiotherapy needs to be done regularly if someone is going to make meaningful progress. In Lesotho, as in the UK, the families of children with disabilities are key in their children’s improvement. Usually after I demonstrate the exercises, I get the families to copy me and then continue the exercises until their next review. Families respond to this challenge on a wide spectrum from being totally brilliant to doing absolutely nothing. Interestingly the team has found here that it is often the poorest families who respond the best.    

 

The boy’s balance and core muscles are weak, and we play some games that challenge his sitting balance to help strengthen his muscles. Holding a horizontal stick out in front of the boy he can stand with some assistance at the pelvis. I notice he wants the stick held vertically and when I turn it around the boy climbs his hands one over the other up the stick and manages to stand by his own efforts. It just shows you that despite 20 years of physiotherapy experience a patient will often find a better way of doing things even if they are only two years old. We then practice with the grandfather and a young relative leading the exercises and when we finally leave the boy cries. Crying when the physiotherapist leaves is something I have found unique to Lesotho, I can’t remember it ever happening in Wales. 

 

It’s been a long road back to Lesotho. I was last here in March 2020 when covid struck and I had to make a hastier exit than planned. Since then, I have been using What’s App to keep in touch with Thato and Ntseliseng, who have been running the Physiotherapy and Outreach Program (POP) while I try to advise and help with some online training from 5,000 miles away. Through a collaboration with a Canadian charity, Glasswaters, and a Lesotho cerebral palsy group, Mo-Rate, they have started visiting and assessing children with cerebral palsy in their homes. This program has been taking place around the capital city, Maseru. Once I have followed up their work and reviewed these families, we will start visiting families further out in the countryside.  

 

After my first week of visits I am impressed with what the team has managed to achieve, considering the minimal training they have had from me. What they have lacked in physiotherapy experience they have more than made up for with their ability to educate and engage families with the basic health needs of their children. Many of the children have severe disabilities but thanks to the efforts of the team families are learning how to feed their children better, help relax their muscle tone, stimulate their minds and improve their quality of life. 

 

For the last four years I have been doing voluntary work with two children’s centres for children with disabilities, however visiting for just a couple of months a year has become increasingly frustrating and working with the management of these centres has held its own challenges. I feel outreach work and meeting families is more sustainable and offers greater opportunity for advocacy and education with communities. By the summer of this year, I was prepared to come back and invest longer term into something I feel passionate about. I decided to take retirement, rent my house out and hop on a plane. 

 

I thought just over 3 months would be adequate preparation time for this life changing event, but a series of ever-increasing obstacles meant stress levels reached critical point. Who knew you it was so hard to hand in your notice and claim a meagre NHS pension, that you have to have to have an energy performance certificate (EPC) to let your house out, do online landlord exams, buy and fit storage heaters, obtain police certificates, various letters of residency and requests for voluntary work, that because of covid/Brexit/brainless robots, it is almost impossible to speak to a real person to solve any financial issue or close down an account with 3 pence in it, that no one will give you travel insurance for a covid red zone country, except when suddenly it isn’t a red zone country anymore, hooray!!   

 

By the end of November, I had passed my landlords exams, found an electrician to fit the world most expensive storage heater, passed my EPC, found my ideal tenants, started cancelling standing bills, bypassed numerous robot and online chat “helpers”, stored my personal belongings in my leaky garage, retired, got my pension, booked flights, travel insurance, said goodbye to all significant friends, family members and What’s App groups, sold my van, found a friend to come and pick me up and take me to Heathrow and booked my special PCR test that had to be taken from a Lesotho government recognised test lab. As the last friends came for an evening meal a week before my flight, I was good to go. What could possibly go wrong?

 

And then the texts started coming in. “Have you seen the news?”

Lesotho and South Africa overnight had become red zone countries again and the EU had grounded all flights both ways. A strange covid variant which sounded like an unappetising breakfast cereal had been detected. Well fortunately I was booked with BA who only grounded their flights over the weekend, and at last something good had come from Brexit as the UK didn’t have to abide by the EU no fly rules to South Africa. The British government did advise against all but essential travel, but children’s lives are essential from my viewpoint so if my flight was leaving on December 3rd, and I passed my PCR, I was getting on it. 

 

It’s the end of the day and as I hand the teenage boy in front of me a pair of the crutches that I managed to squeeze into my luggage, I know I have made the right decision. He has been in a wheelchair for the last 6 months for the want of a pair of crutches after he had to have his leg amputated. When I question him about his leg, he says it had to be amputated due to witchcraft after he developed cancer. Once his old crutches wore out, he had no other means to get around except the battered wheelchair. 

 

He puts on the new trainer that I bought in the morning and tests it out using his crutches up and down the garden path. It fits perfectly and he sits down and removes the shiny black shoe, “It’s beautiful”, he says before putting it carefully back in the plastic bag and replacing it with his old trainer back on his foot which his toe sticks out of. “I will save the new trainer for football on Saturday” he says with a triumphant grin before turning and leaving with the bag clutched tightly in his hand. It’s been a good day but the battle with the witches has only just begun.