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Hi everyone

I've figured out how to change the settings on this 'ere Blogspot, so now anyone can leave a comment without having to have a google account or anything. So please feel free.

Any requests for topics?

:o)

To change or not to change...

As part of this job, my interpreter and I often visit young people with disabilities in their homes. I am often close to tears.  

Even the worst situations I came across in Smethwick and West Bromwich seem like luxury compared to the lives of some of these people. 24 year-old Định didn’t mind me sharing his story…

Định's father left his mother as soon as they realised their son was disabled. Throughout his childhood and teenage years, Định stayed at home in the small hut, alone, while his mother worked in the fields to provide enough food for them both. Định's mother died four months ago. Now his aunt brings him food, and his cousins visit occasionally, but other than that his only human contact is in the evenings and mornings when his uncle comes to lift him on and off his bed. Định has severe pain in his hips and his neck. He was given a plastic wheelchair, but it broke a long time ago.

A wonderful NGO called Orphan Voice are now supporting him and his aunt and uncle with food packages, and I'm organising a new, stronger and more comfortable wheelchair for him through the organisation I am working with. But it's not much of a life, is it....

My point in giving this example, is that when we visited Định, neither my interpreter or the local volunteer who took us to see him were at all surprised or distressed at what they saw.

They don't see any particular problem in the way these young people have to live.

Here in rural Vietnam the difference between the lives of poor people with disabilities, and the lives of people who are just very poor is, sadly, not that huge. The people I work with see similar dirt, discomfort, barrenness, poverty and lack of opportunity in 'normal' fully-able-bodied homes. People here have, very recently, been through times of such hardship and suffering that their concept of a ‘decent’ standard of living is far far lower than my relatively-very-privileged UK standard.

My role here is to convince people of the benefits of doing some kind of creative therapy with young children with disabilities, and then to teach them how to do it.

But if people don’t see something as a problem over and above other problems, how can you convince them to work to change anything?

When it comes to the effectiveness of rehabilitation centers, lack of information is surprisingly rarely the problem. I’ve uncovered all sorts of useful booklets, advice sheets, CD’s and information packs (all in Vietnamese, often with pictures) from dusty cupboards. The staff and parents just don’t think to read or make use of it. They’ve attended numerous good training events, with financial incentives, days out, lunches and certificates, but for some reason they don’t apply what they've learnt. They say “thank you very much, that was very interesting and helpful”, and lose 95% of it on the motorbike home. It’s wasted.

WHY?

As I mentioned above, I think firstly people don’t have any motivation for change. A lack of physical ability is not the only barrier for these children. Even if we help a child to develop physical skills to the point that he/she can get around, they will most likely still not be able to attend school, or get a job to earn a living. The improvement to quality of life that I promote as a benefit of therapy are often not considered worth the thought and effort and time that the therapy requires. What we (in the UK) would consider an achievement is relatively meaningless for these families – “Wow, look! Jimmy lifted his hand up all by himself!!” is not something you’d ever hear here…. it's just not relevant.
What these families want, and need, is a child who can support them in their later years (there is no social security to speak of) – so understandably they will reserve the majority of their time, attention and money for an able-bodied sister or brother. (That’s if they have an able-bodied sibling… unfortunately some Dioxin/Agent Orange affected families don’t seem to realise that after 2 or 3 children born with disabilities, they should stop trying for an able-bodied child…)

Secondly, staff and families don’t have a lot of faith that ‘therapy’ works. It’s impossible to know whether a child develops better because of therapy, or whether they would have got there anyway. Whilst we can understand why it works, and demonstrate improvements, and explain benefits, we can’t prove, scientifically, that therapy works. It's almost impossible to get robust evidence, because it's inethical to withhold treatment if it can be offered. What makes it even more difficult to convince people is the fact that children can take years to do things. Changes are slow, and difficult to measure. And in addition, some kids with severe brain damage will never be able to do very much, no matter how much therapy we try invest in them.

So for these rural farming families, time and effort are far too precious to be risked on something that can’t be proven to work, and which won’t, at the end of the day, affect their disabled child’s inability to support them later on in life.

Quality of life is a luxury. Things will only ever change significantly for those with disabilities here when the area as a whole is lifted out of such grinding poverty. And this is out of the hands of the individual families and volunteers I am working with.

Still. I’m quite stubborn. I’ve come here to do a job and I won’t give up on potential. My ma used useful gardening terms to refer to the work we’re doing here –  sowing seeds and drip-feeding. Gradually, slowly, consistently, planting and nurturing ideas. So I continue to promote movement and play and engagement with the children. I show by example, and explain to families and staff again and again, in different ways, the benefits of having children who are slightly more independent and happy. I try to make everything I teach easy to do at home, and try to use materials and items that they can get hold of very easily and cheaply. And I do believe it will have some impact, however tiny. And that's enough to keep working for.

I’m also going to produce a short storybook, telling the concurrent stories of two families in a village. Both families new-born babies with a brain injury (cerebral palsy). One family have no hope and no motivation, and do no therapy with their child. He lies on his back all day, and learns nothing. The other family decide they want to see what their child can learn, even though her body is awkward and abnormal. They try things. They make things using materials in the home and the market. They get advice. They go to the rehabilitation hospital.

The story will hopefully outline how one child has absolutely no chance to develop, and the other slowly but surely learns to do some things. It’s very difficult to write, because I need to be careful that parents don’t read it and think that if they do the same things as the fictional family, then their child will be able to do the things that the character learns to do (every child is different, every child needs different treatment). It’s the concept that I want to get across, not the specifics.

I’d like to distribute this storybook to doctors, so that there’s a chance they might discuss the ideas with families when they diagnose disabilities in the first place (as opposed to “Sorry, we can’t do anything about it. Just take your child home.”) Ideally, they could give the families a copy. Other potential places to distribute would be therapy departments, child health nurses, and Government Red Cross departments….

But at the same time as I’m putting a lot of effort into this, I’ve still got a horrible feeling that in a year’s time, my booklet will be found nesting in dusty cupboards along with the rest of them….

Why expensive equipment isn’t always the best thing…..

If you think about a day centre for kids with disabilities, you'll probably imagine rooms full of wheelchairs, mats, balls, parallel bars, frames, special seating, rolls, wedges…..

When disability centres are being established in developing countries, the initial focus is often on buying equipment. On filling the rooms with “things” to help the children.

Big deliveries arrive from the capital, paid for with foreign funds; shiny and brightly coloured and expensive and attractive.

This is completely understandable, and always done with positive intentions. But I’m going to suggest that putting all this ‘stuff’ into a poor rural day centre doesn’t actually help. In my opinion it causes a problem....

Parents start to bring their children to the centre for therapy. There’s a therapist, who (with varying levels of understanding and ability) uses the equipment for activities and games to help the children’s development. The parents watch and are happy. But this approach, whilst fun and beneficial for the child, encourages the parents to view ‘therapy’ as ‘what the child does with the therapist, using equipment, at the centre’. They are led to believe that therapy can only be done by someone with training and a ‘title’, using the expensive mats and rolls and wedges and seats from the city.

During the rainy season, or the harvest time, or a national holiday, or when it’s too cold, or too hot, or too misty, or the winds in the wrong direction… the family might only attend the centre once every three or four weeks. So if the child’s therapy is limited to what they do at the centre, they’ll only be engaged in activities to help their development for a few hours every three or four weeks. The rest of the time, during normal life at home, they will often just lie on their backs on the floor or on a hard bed.

In order for a child with a disability to develop to their potential, their parents need to become ‘therapists’. The parents need to understand that ‘therapy’ is a way of thinking. That therapy can, and should be, incorporated into absolutely everything a child does in daily life.

Therapy is the position a child sleeps in. The way you pick them up when they’re small. The way you don’t pick them up when they’re bigger. It’s the way you talk to them. The things you ask them to do for themselves instead of doing for them. It’s the pillow you tuck under their arms, or between their legs. It’s the direction you put them to lie on the day bed. The way you feed them, or help them to feed themselves. It’s the way you carry them, or don’t. The way they sit on the floor, or don’t. The things you encourage them to play with. The things you encourage, and the things you don’t let them do.

Parents (and families) need to adjust and commit to constantly thinking about how to make everyday life ‘therapeutic’ – or an opportunity for their child to learn new skills.

These families cannot afford big deliveries of shiny, expensive equipment for their homes. They’re certainly not going to get it for free from a National Health Service like families do in the UK. They have what’s available from the market. They have plastic stools and tables, available in one height only. They have blankets. They have bamboo mats. They have pillows. They have washing baskets. They have bowls and spoons. They have cardboard boxes and the packing inside them. If they splash out a bit and visit a bookshop they can get playing cards and crayons and colouring books. They have walls and windows and steps and bamboo growing outside.

My point is that therapy centres, and therapists, in poor rural areas of developing countries should focus on teaching families positions and activities that they can easily replicate at home, making creative use of things that are easily and locally available, rather than demostrating the use of expensive (and often imported) equipment from the cities. They need to think long-term. And local. And self-reliant, rather then dependent on outside funds, which are all-too-easily pulled.

If things from the market things break, as they do, they can be easily replaced, and life and therapy goes on….

If a child grows too big for a set of bamboo walking rails, then the family can cut some more bamboo and make a larger set.

If a child is using a home-made cardboard chair, and develops better sitting balance, the family can make a new chair that doesn’t have so much support.

If a childs needs more support in the wooden standing frame made by the carpenter in the village, then the family can take it back to the carpenter in the village and ask him to add some.

(Having said this, there are some pieces of equipment which are very important for the development of any child with more severe physical difficulties – specialist wheelchairs, plastic orthotics (splints) and walking aids for example - which should be made to measure and are best provided by people who know what they’re doing. I'm not about to start knitting walking frames....)

So my advice to organisations setting up rural therapy centres - think about your aims.

If your aim is to provide top-quality therapy in your centre, then grab your catalogues and get ordering.

If your aim is to teach families how to bring out the potential in their child, then think about holding back. Hit the market instead.

Cardboard chairs and the rainy season....

As you'll see from the post on 'cardboard chairs' - we were feeling proud of the made-to-measure chairs, and the kids were excited to start using them - so we finished them with a coating of tough coloured paper, and left it at that.
ERROR!!!

A couple of weeks later the rainy season hit - and I hadn't been prepared for quite how damp it would be. Constant rainfall - day and night, for weeks on end. The air was heavy with moisture, clothes never quite dried out, everything felt damp.

Dampness + cardboard chairs = a bit of a problem

They went soft and soggy, and started to go mouldy.

So as soon as we had a few days break from the rain, they had to go out in the sun to thoroughly dry out, before we properly finished them with spray paint and a couple of coats of varnish. Not ideal in terms of toxic chemicals, but the treatments have proved absolutely necessary, and I haven't seen any forms of seating available that aren't either made from plastic or covered in varnish. 



Cô Sương demonstrating the chair she made for Hung.



It seems to have done the trick.

So if you're trying something similar, anywhere in the world - be smarter than me and think about the seasons your chairs might need to weather....

(We're now­­ playing about ­with polystyrene chairs, beanbags, packing boxes.... I'll update ­­­­­­with pictures soon.)

Big Brother - maybe. Nanny state - definately NOT

I really like it that here in Vietnam, people are generally left to make their own decisions about whether or not something's dangerous. This is definately not a nanny state.

But being left to their own devices, people can do some really, REALLY risky things......

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In the cities it's almost funny to watch glamorous fashionistas on the back of motorbikes holding their helmets in the air above their hairstyles, ready to put them down should they pass by a policeman. Or to see girls wearing helmets with big holes cut out to accomodate the sparkly hairclips.

Children here are apparently magically protected from injury... it's normal to see parents (in helmets) sitting solidly on the bike, whilst one, two, three children stand in the middle, no helmets....

On the highway it's not unusual to see motorbikes speeding along with passengers holding huge panes of glass sticking out sideways far far into the road... and thats just getting started on what can be attached to the back of motorbikes. So far I've seen a double wardrobe, a double mattress, an American style fridge, a bicycle, fully grown pigs, and now..... a coffin (I really really hope it was empty). Not all on one bike, obviously, but all quite incredible in their own rights. Both in terms of 'give it a go' optimism, danger level and astounding lack of concern for life.

I'm sure that the utility companies do have policies on health and safety, but I still hold my breath when I see dudes leaning ladders against the cables, climbing up and rooting around amongst the tangle, with motorbikes zipping around underneath.

Walking past a part-built house the other day I noticed that the builders using a technique for throwing bricks up onto the first floor using what looks like a long thin lacrosse stick. The bricks land exactly where the person on the first floor is busy doing the same thing up to the second floor. There must be an entire ward at the local hospital full of people with brick-shaped dents in their heads.

If a plug breaks, leaving only one pin, it's quite normal to see them jammed in sideways, sparking every time someone nudges the cable.

During a recent downpour, the caretaker for the centre was standing on a table, water pouring through the leaking roof, fixing the electric light. I couldn't look. 


I'm sure these situations aren't limited to Vietnam, but it does seem that a lot of people here are very relaxed about the whole life/death thing. Maybe it's the Buddhist influence....   :o)