Blog 40: We must hope for better things

On Sunday we go to visit another family on the outreach program. I have been on a visit to this home once before in 2017, not long after the children’s mother died. At that time only the brother, Teboho, was at Saint Angela and his two sisters were living with the father in a small broken-down hut, with a leaking roof and black soot walls. We came to bring them some bedding and build a ramp so that Teboho could get in and out of the hut independently. 

Next door was a far better house and the auntie was persuaded to let the family use that. Since then Teboho’s two sisters have come to Saint Angela. The three siblings all have Osteogenesis Imperfecta, OI, also know as brittle bone disease (see blog 39). There are differently levels of severity, and in Teboho’s case he is a wheelchair user. The girls can still walk but they have bowed legs, the youngers sister’s femur impossibly curved, her pelvis tilted, the older sister has a scoliosis. 

Although the sisters are teenagers, they are only about a metre high, due to their poor bone growth. Both are a tour de force, with bright engaging smiles, always in the middle of any fun and games going on at Saint Angela. It is my fear that unless they get treatment they will also end up in a wheelchair like their brother.  

Before I came out to Lesotho Thato messaged me that the sisters were unable to pay the boarding fees at Saint Angela and Teboho his school fees, because the father is illiterate and can’t fill out the forms for the government grants, further complicated by not having a death certificate for the mother.  With donations I have covered the 13,000 rand that is needed to pay the fees. However, as I tell Mamkojo, this will not happen again and by the end of the year the paperwork needs to be sorted for next year’s fees. 

The other reason the paperwork is required is that if the girls have a chance to see a specialist in Bloemfontein, they can obtain a passport to get there. The paperwork starts with getting a death certificate for the mother and with no social worker to try and sort out these complex family situations, I can feel a journey of epic proportions coming on. It begins in the form of a grand expedition as the three kids, the care father, Mamokojo, Mamokhosi, me, Thato, the driver and two wheelchairs, somehow cram into the van. Fortunately, we do not have the health and safety regulations of the UK to be concerned about as we bump joyfully along the rutted roads of the countryside.   

I wonder how the ramp we built in 2017 will have fared in the last 3 years, not very well I suspect as we only used half a bag of cement and some earth and stones. I also wonder if the family are still living in the same house as the auntie didn’t exactly embrace the idea of them living there, even though she wasn’t using it.  We arrive, they are still using the same place and the father greets us from the open door. Unsurprisingly the ramp has broken, but it shouldn’t be too difficult to fix with a decent mix of concrete. I decide to investigate the toilet situation. 

I ask Teboho where it is and his points towards a small corrugated construct leaning at about 45 degrees. I am a bit puzzled and push him towards it over the grass. It far worse than the leaning tower of Pisa and I arrive unclear how anyone can get in or out of it. Everyone starts shouting at me pointing back the way I came, and I reverse about 10 feet.

“Where?”

“There” they all shout as I stare stupidly at a concrete breeze block laying on top of the grass. 

“Yes here” Teboho confirms pointing at the block

I am not understanding how the block with its two small holes a toilet and Thato and Mamokojo come across to explain. 

“There is a pit dug underneath and you sit on top of the hole in the block” There is a pause while Teboho demonstrates this neat manoeuvre. 

“Well I can see it’s a good height for small people to sit on but there’s no privacy at all and how do you take a crap down such a small hole?” I ask bluntly

“It takes some planning” Thato says laughing at me

“Okay, well something more comfortable and private needs to be sorted out in the future. For now, do you want to try and find out why there is no death certificate for the mother after three years?” Thinking to myself, thank goodness I can’t speak Sesotho and thus am able to avoid this conversation. 

Thato and Mamokojo go back to speak to the father and the auntie, who has now turned up from her nearby house. I look at the distant hills, the small mounds of sad earth next to aloes plants, underneath one of which the mother must lie, the breeze block on the grass and the crazy leaning town of Pisa long drop toilet. 

I walk over to the old hut which has now nearly completely fallen down and the father comes up to me talking excitedly in Sesotho. He takes me by the hand and pulls me along to show me the cracks in the walls of his present house and how that is also falling down. I emerge from the dark interior and the auntie greets me like a long-lost friend, and then carries on her conversation with Mamokhosi. 

Thato fills me in on what has been said so far. “The problem is that the mother was not taken to the mortuary so there is no death certificate. The auntie has to write a letter confirming the mother is dead and some of the people that went to the funeral must also confirm this and the chief. The letter has not been written as there is a family dispute over property and land. 

At this point Mamokojo enters in the fray and the auntie carries on forcefully putting her viewpoint while Mamokojo answers her in quiet measured terms. I wander around to the back of the bus where the kids are. Then quite suddenly we are going, and everyone piles back into the minibus. I hurriedly hug both the auntie and father, unheeding of the advice that neighbouring South Africa has given its citizens, that they should not to hug anyone because of the coronavirus. My diplomatic hugs are necessary to show I do not favour either side, maintain relationships and hope everyone has sorted out their differences. 

   

“So, what happened?” I ask Thato as I get into my seat

“The auntie has said she will write the letter by Easter” Thato replies

“Wow!” I say stunned. “What changed her mind?”  

“Sister said she had no choice and that the children would suffer and not be able to continue at school if she didn’t write it”

“Yes sister!” I turn to congratulate Mamokojo, mightily impressed this nun who has a twinkle in her eye but is not to be messed with. 

We arrive back into Maseru where a large political rally is taking place with people wearing yellow shirts. “The good guys or the bad guys?” I ask Thato 

“I don’t think we have any good guys,” she replies ruefully, “these are the prime ministers’ supporters.” 

It turns out there was no vote of confidence this week in the prime minister as he said he will retire in June, although as yet he hasn’t specified the year. All the people in yellow shirts look very happy. We are just happy to get back to Saint Angela with the prospect a letter might be written to confirm a mother died three years ago and her children might in future be able to prove they are entitled to the government grants they need to continue their schooling.   

The problems the children have combined with their social situations, poverty and lack of resources, feel overwhelming. Many have HIV as well as conditions like cerebral palsy and to get to school, which is only next door to Saint Angela, they are trying to propel heavy, broken wheelchairs, across rutted ground, which gives them back ache and tightens up all the muscles we are trying to get them to stretch. New wheelchairs and a proper path and ramps to school would cost thousands of pounds, and I don’t know where such money can be raised.  

We go to visit the principle of the high school to ask permission for a couple of the teachers to come to the physiotherapy training next week. I take the opportunity to ask whether there are any grants available for infrastructure improvement. The Principle is sympathetic but doesn’t even know where she is going to find the money to pay for the private teachers and ancillary staff who haven’t been paid for months. 

It’s a depressing story I won’t go into. The principle is trying to get an audit done to remove “the problem”. Meanwhile she can’t sleep at night and wishes she had retired. “We must just hope for better things” she says, and I know how she feels. We leave and try to stay focused on doing assessments in the afternoon, which we have scarcely touched on because of all the other things we have been doing.

We have only just started when Mamokhosi comes into the room to ask if I remembered about the girl who needs assessing to come to Saint Angela because Mamokhosi is unsure whether she is independent enough to cope. No, I hadn’t remembered because it was over a week since she mentioned it and a lifetime ago. It turns out the ministry of social development is putting a lot of pressure on Saint Angela to come to let this girl attend. Mamokhosi succumbed to the pressure and said she could stay a couple of weeks to do physiotherapy with me to see if she improves. I think it’s called passing the buck 

We dismiss the lovely Bokang, who is an absolute joy, and the girl, Eliza, comes in with her auntie, Deedee. Elizas problems are immediately obvious as she sits there in her wheelchair. She has a very bad scoliosis, can barely lift her arms against gravity and has no muscle power in her trunk or lower limbs. She is 12 years old and must weight 70 kilos. I have to get two strong men to transfer her into a chair. There is no such thing as a hoist here and at home her older brother, has to lift her.  

I can see the desperation in both Eliza’s and Deedee’s eyes but there is no way that Saint Angela has the capacity to help her without compromising the safety of the staff and impacting on the other children’s care. I have to say no, she cannot come to Saint Angela and I cannot do physiotherapy with her for the next two weeks. 

I feel absolutely wretched, but it’s much worse for them. They both have tears in their eyes as their hopes for a brighter future are smashed by my decision. I search desperately for something positive to come out of their visit and suddenly remember Majubil, who also has a very bad scoliosis and uses some very useful form inserts in her wheelchair to support her spine. 

Majubili comes to the room and lends Eliza her inserts, which work really well. Deedee takes some pictures so she can make some at home. She also takes some pictures of the exercises I suggest, and I reassure her that all the things she has done up to now are beneficial for Eliza and she is a good therapist. She is in tears and I hug her and Eliza and wish I could have done more for them. Majubili saves the day, instantly befriending Eliza with her infectious giggle and playing catch with a bean bag. They go off to spend the night at Saint Angela before Eliza and Deedee have to return on their long journey home.  

Thato and I collapse in an emotional heap but agree there was nothing else that could be done. Tomorrow is another day and we must pick ourselves up and try to assess the children here and do what we can for them. I get back to the guest house exhausted but get no sleep as on top of the days trauma I find out the Lesotho government has banned international travel and I could be here indefinitely. After today, the prospect is not one I relish.

The next morning, we finally make some progress with the assessments and setting up individual physiotherapy diaries so the kids can be more independent in running their own programs. I get back feeling more positive and am just going to bed when I get a call from Jon, the head of Wales for Africa, asking if I want to get out of Lesotho while I can. Obviously, I don’t want to get stuck here, but it feels a bit feeble going home when there is so much I need to do. 

Jon gets in touch with the Lesotho High commissioner, who wasn’t aware that the borders had been closed. She finds out it’s a badly worded government note, not intended to imply that the borders are closing, just that there are restrictions on Government travel. Phew! For the moment I am saved, and even have 3 toilet rolls and a packet of pasta to see me through the crisis. 

The next day we go to town in the morning to secure supplies for ramp building. Things are going well until we end up until we end up in a junk yard looking for the gravel man. The gravel lady says they only sell gravel by the lorry load and only the gravel man has the paperwork and the authority to sell it. She is very vague about where he’s gone, how long he might be and whether she can phone him to find out the answered to these questions.  

We cross the road for the second time. The junk yard spreads either side of the road and there seems to be confusion about which side the gravel man resides in. Then suddenly a gravel lorry appears, then disappears, then reappears and the gravel man arrives! Some girls want diamonds, I just want gravel and buy a whole lorry load of the stuff. Amazingly we are back at Saint Angela in time for lunch. We have an entire afternoon of physiotherapy, only interrupted when the gravel man arrives with his precious load. It’s just like Christmas 

Boxing day follows with the arrival of cement and supplies but there has been a miscommunication and we end up with a hatchet, instead of a pickaxe and a huge piece of shutterply. Its Friday afternoon and we must brace ourselves for Maseru traffic and a renegotiation of the invoice at Cash and Build. Once this is achieved we then go to Alex’s home to make a plan and take a load of heavy gravel, seriously compromising the clearance of the Saint Angela van. 

The logistics of the ground we have to build the ramp on are complicated and the best way to do it appears to run the ramp alongside the house, rather than straight out from it. The skills of our collective are Lebs, who is strong, the driver,Tsotetsi, who seems to know something about making cement, myself who has built an indoor wooden ramp in 2018, which proved to be a very traumatic experience, Thato who has watched a dozen different videos on ramp building with me on You Tube and Alex’s dad, who has brought a small amount of rocks and earth to the party and seems to thinks that will suffice. Praying that tomorrow will bring some inspiration we depart into the evening traffic. 

The need for a ramp at Alex’s home has been an issue for years. He has brittle bones, multiple fractures and is most comfortable in his wheelchair (see blog 39). He has been reliant on someone lifting him in and out of the house but there is not always someone there. I remember a sad tale of him desperate to use the toilet one day and managing to get out of the house, but unable to get back and having to spend the whole day in the rain. For the ramp to work it needs to have a big enough turning circle for him to get out of the door and ideally for every inch of drop a foot run off. It’s going to be a big job, 25 feet long, over 6 feet wide and needing a lot of infill.  

First foundations need to be dug and a retaining wall built, 

we run into problems immediately. We thought it had been agreed we could use breeze blocks from the new build next door to build the wall, but now that is not possible, and we must scrabble around to find rocks instead. Some uncles turn up, one very grumpy who says it will never work, while Alex’s auntie and step mum start having a domestic with his dad, saying he should have built a ramp years ago. Dad goes off in a huff, Tsotetsi and Lebs get started on the foundations while Thato and I try to find stones.               

Tsotetsi understands the logistics of the build very quickly and with both him and Lebs being real grafters, the idea rapidly takes form, so people realise what needs to happen. More uncles turn up and start working, even the grumpy one. Alex’s dad reappears with a wheelbarrow full of stones and works hard for the rest of the day. The construction takes about 8 hours to complete, has a decent turning circle, regulation drop and safety rim. It’s a proper job.

As the day goes by it becomes a real community build, the ladies make food for everyone, chat and become friendly with Thato. Various people drop by and as we are finishing up the old lady next door gives a speech and announces what a wonderful thing has been done. I agree with her, most of all it is a wonderful thing for Alex to have some independence, but it has also been a great thing in raising awareness in the community of the rights of people with disability. We can hope for better things, but we can do more than just hope and do something practical to change things for the better.