I go to Bloemfontein with the occupational therapist on the hunt for wheelchairs, he has stuff to pick up too so is happy to drive my car and be my guide. After a tedious interval at the border doing lateral flow tests, it’s a smooth 130 km to the city and a rather hot and not very successful foray for wheelchairs. There are plenty of chairs but only in standard adult sizes, so I only get one for the biggest boy. I also manage to get crutches, foam for seating and yoga mats for padding, so the journey is not wasted. I use donations I have been given from folks back home to buy the equipment and I have more money to make further purchases. Next time I will ensure I order wheelchairs of the correct size from the shop so they are ready to be picked up when I visit Bloemfontein.
When I give the boy his new wheelchair, see his smile and the way he spins the chair on the spot the day trip is worth it, especially to alleviate the nerve damage down his arms which the old chair was causing him. Although the old chair is shocking a couple of enthusiastic teachers reckon they can bolt it back together and cut down the sides to stop it impinging the nerves under the next users arm pits. They manage to achieve this, then it’s up to me to pad it using contact adhesive and yoga mats and cut the foam down to size for cushions and a back rest. The jobs a good un, ignoring the bolts and screws sticking out at the back but these are mere aesthetics.
Pleased with how the repaired chair has come together I have just the boy in mind for it who has a terrible scoliosis and is currently using a wheelchair with just a bit of plastic canvas for a seat and no back support or footplates. Unsurprisingly he has terrible back pain. Passing by Saint Angela on Saturday morning I spot him and tell him I’ll bring the wheelchair over, within a flash I am surrounded by half a dozen children asking about other possible repairs to their equipment and I come back with tools, contact glue and yoga mats.
I knock on Sister’s door and tell her I am here to do some repairs. Standing on her doorstop with a rucksack full of repair bits it’s a fait accompli so she says okay! Outside in the yard it’s a bit like a TV program called The Repair Shop where people bring broken items of sentimental value to be fix by a team of experts. Actually, it’s not like the Repair Shop in that I’m not an expert, barely have any tools and the items are vital for these kids’ lives and independence rather than just of sentimental value. The only similarity is most items are broken and look worn out beyond repair.
The first fix is a simple one, just replacing a crutch tip. Next, I provide a boy with shocking lower limb contractures a knee cushion, purchased in Bloemfontein with him in mind. His knees have become so locked together I’m not sure how he manages to go to the toilet or attends to any personnel hygiene. The cushion provides a soft wedge between his knees to hopefully keep things deteriorating further but his broken-down wheelchair is adding to his problems, and I must replace it as soon as I can find something more suitable.
Next, I pad the handles of a girl’s crutches with strips of yoga mats and contact glue. Her hands are being wrecked by the hard plastic handles of her crutches. After that I attend to the boy who is getting the recycled wheelchair. The seat and cushions are a comfortable fit but there’s something wrong with a front wheel and it’s very hard to self-propel. The boy insists we take it off, and feeling I might regret this, I oblige to see the last bit of thread holding the internal rod disintegrate in my hands. Now having only three wheels left we are joined by a couple of other children who also only have three wheels left on their wagons, so three wheelchairs with only 9 wheels between them, great!!
I call for help. The care worker has a bag of bits and a screwdriver. Using these additions, I take the wheel off the boy’s old chair and use any bits I can find that are less broken, I replace the shredded internal workings of the wheel from the recycled chair. Somehow it works and goes around, for how long I don’t know.
“Mme Jan, I want to thank you” the boy says softly as he has watched me battling with rusty bits of metal for the last hour. He’s a teenager still at the primary school, desperate for an opportunity to read and write. His body is more battered than his old wheelchair and he is in constant pain, yet still has a smile on his face. He’s worth any help I can give him. The care worker has some oil to smooth the wheels workings and also thinks he can sort the other two cheap Chinese chairs whose wheels have fallen off. That’s a relief as without them the kids can’t get to school, but as the ground is so rutted its likely they will soon all be in bits again.
The environment these kids must battle with every day is ridiculous. Back at the primary school the principle shows me the disability toilets that have been built by the ministry of education. They’ve never been used as there is no access to them. The ministry said it only had money for the toilets, not paths so the toilets remain monuments to inappropriate environment they are surrounded by and the lack of thought and care about the needs of children with disabilities. The lack of planning and knowledge goes all the way to the top in the Lesotho government and to try and raise of these issues is one of the reasons for the workshop we hold with stakeholders on National Cerebral Palsy awareness day on March 25th.
The build up to this day has gone on for weeks. There are certain ways of doing things in Lesotho, etiquette of the ways invitations must be sent and who must be invited. I have no idea about how to set about this, but fortunately Thato does and launches an administration marathon. There is also food and caterers to organise, as a workshop without lunch would be a disaster, sweets, things to put sweets in, notepads, pens, flip charts, the list goes on …
Adding to complications in the last few days we finally get an invitation from the department of trade for an interview to register as a non-profit company. Without this registration its hard to work with other organisations and government agencies. We pick up a letter from the lawyer and zoom down to department of trade and wait for an hour to be seen. It doesn’t go well. The interviewers are not impressed that we don’t have an office and even less impressed that we don’t know about article 15 of the non-profit organisation registration act. I try to move my eyeballs to look at Thato, without turning my head, to see if she has any idea how to get out of this dilemma.
Thato apologies and says we will research this area a little more and rewrite our application and hand deliver it tomorrow. We add this to our list of things to do, including making a short film of a seven-year-old boy with cerebral palsy who is one of the few youngsters with CP in Lesotho with a chance to go to school. The registration letter is delivered for the second time, and the film about the boy made, despite a near catastrophe when I fall over an unnoticed potty in the corner of the classroom and nearly bring down the flimsy barrier separating his class from the adjoining class. I recover my balance in time to avoid squashing about 30 children and adding them to my physiotherapy list.
The day before the workshop we go to the venue, which is at the Lesotho National Federation of Organisation of the disabled LNFOD. I’m not impressed. I thought they had a proper conference room big enough to comfortably fit 25/30 delegates, not a small room filled with boxes and a filing cabinet. It’s too late to change anything so we remove the boxes, which immediately improves things, but find they only have 15 chairs and a projector which won’t link to our laptop.
We must go into town to find chairs, bottles of water and all the other last minutes things we need. The driving is a nightmare for me, even though I am now a veteran of going through red lights and tussling with local taxis drivers at free for all junctions. We find some chairs at last and all the other stuff we need but no projector. We return to LNFOD with the chairs but they are now holding a meeting in the room so we can’t go in, set up the room or test the projector again. We leave and go to Selemela, an organisation we are linked with who are blessed with a large office space, two projectors, numerous laptops, dozens of spare chairs and only one person using entire building when we enter mid-afternoon.
Thato and Ntseliseng are obsessed by the chairs, which are far nicer than the ones we have hired. I am obsessed by the two projectors, as my presentation and film need one to play. After an hour, trying both projectors and different combinations of laptops and flash sticks and the help of the guy at Selemela, nothing works. It’s gone 5 o’clock getting dark and we leave with both projectors, a laptop and a load of stress. We pick up another laptop from Ntseliseng’s friend and return to the guest house to try again. Thato’s husband, Justice, adds his projector to our stash and finally after 4 projectors, several laptops and flash sticks, we get a combination that works.
Exhausted we get a few hours sleep before being up with the lark to print off programs and set the venue up before registration at 8.30am. I find that Thato and Ntseliseng have got a local driver to bring the nice chairs from Selemela and we are now blessed with more chairs that we need. It’s a frantic rush to set up everything up on time but as usual in Lesotho everyone arrives late so we need not have worried. Most people are not more than an hour late, so it’s a positive triumph and one teacher even arrives early. When I asked Thato who she is, Thato tells me she was a teacher who arrived half a day late for a training event I ran a couple of years back and I refused her admission. Obviously, this time around she was a lot keener to attend!
The event goes well, with quite a lot of emotion from a couple of the mothers of children with cerebral palsy who give talks, and some useful feedback from representatives of special education. Apart from my talk on understanding the medical background to cerebral palsy, most of the conference was held in Sesotho, so I don’t know the specifics of what people were saying, but for such an emotive day it was best that people expressed themselves in their first language. In terms of raising awareness of what cerebral palsy is and the problems that children and their families in Lesotho face trying to access health facilities and education the workshop was a success. Thato did a great job getting coverage from the press and TV and much to my surprise I appear on Lesotho National TV saying something reasonably coherent in terms of how the physiotherapy outreach program empowers children and parents. A practical outcome was also achieved with a resolution by stakeholders at the end of the day to work more closely together and try to resolve issues like environmental access where combined efforts are likely to be more effective. A good result all around worth all the effort.
Thato, Ntseliseng and I are both physically and mentally exhausted by the time its all over. We still have to clear up and take the hired chairs back, but we are happy that everything came together in the end. Everyone turned up, eventually, and took part to make it a positive, memorable, and useful experience with the media capturing it to give national coverage. The director of Mo Rate told me it was the “happiest day of her life”. I think for me it can be summed up by one word, “relief”. I find it much more enjoyable working face to face with children and families and would rather run a repair shop than a workshop any day. Sometimes, though, you need to go beyond the local community to be an advocate and hope that such events will add a little bit more awareness at national level and policies and attitudes will eventually become more enlightened. Now it’s its back to grassroots level for April and dramas of a different kind.
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