To change or not to change...
on Lucy Otto (Vietnam), 19/Jan/2011 11:42, 34 days ago
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 Địnhdidn’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'smother 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 visitedĐịnh, 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 acopy. 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….