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 | You and Yours - Transcript 91Èȱ¬ Radio 4 |
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| TX: 12.03.04 – DID CONDUCTIVE EDUCATION EVER ACHIEVE WHAT IT CLAIMED? PRESENTER: WINIFRED ROBINSON |
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| THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 91Èȱ¬ CANNOT VOUCH FOR ITS COMPLETE ACCURACY. ROBINSON Now everyone wants the best for their child. For the parents of children with disabilities that can often mean a frustrating fight with authority to secure even the basics. Twenty years ago one couple's battle on behalf of their son inspired a 91Èȱ¬ television documentary - Standing Up For Joe. Joe's parents had taken him to the Peto Institute in Budapest so that he could have conductive education. It's a teaching method for brain damaged children, combining physiotherapy and speech therapy, alongside very high expectations of what individuals can do. After a period of intense public interest though conductive education has largely dropped from view, until a few weeks ago when another parent - Peter Randall - announced a plan to sell his kidney to fund conductive education for his daughter. But did conductive education ever achieve what was hoped? We'll be discussing that in a moment. First Will Yatesreports on its recent history - the original 91Èȱ¬ documentary used language to describe disability which might now be thought inappropriate. CLIP FROM STANDING UP FOR JOE These children are handicapped by cerebral palsy. The fact that many of them do not immediately look handicapped bears witness to the institute's belief that although cerebral palsy is itself incurable, with proper teaching it can be mastered, it need not always cripple a child. YATES The documentary Standing Up For Joe, broadcast in 1986, introduced us to conductive education, pioneered at the Peto Institute in Budapest. CLIP FROM STANDING UP FOR JOE Two years ago Mike and Lisa Horsley brought their son Joe to this institute. He was multiplied handicapped. They'd been told in England that he was irretrievable - that he could hear but couldn't speak, that he was probably blind and that he would certainly never walk. They brought him to a world where no one is interested in such pessimistic prognoses - a world full of optimism, a world full of fun. YATES The documentary showed the British public powerful images of disabled children being taught strenuous physical exercises - pulling themselves across benches to build up their upper body strength and being put through their paces towards the ultimate goal of walking unassisted. CLIP FROM STANDING UP FOR JOE Here the immediate impulse simply to comfort the handicapped is replaced by an almost stern resolve to fight that handicap. At first Joe didn't like it at all. A response that pleased the institute for it showed an intelligent and forceful mind at work within his tiny damaged body. He's refusing to do it, he can do it. We always felt that there was a lot in there, that he was a little boy that was locked inside his physical handicaps and a lot of frustration - a lot of crying and screaming - which we always put down to frustration. YATES Joe's story provoked a massive response - 11,000 letters to the 91Èȱ¬, questions in the House of Commons and a new national charity - The Foundation for Conductive Education. Other British families flocked to Budapest and demands led to conductive education being made available here in the UK. It's now back in the news after Peter Randall offered to sell his kidney to raise the £110,000 needed for a two year course for his six-year-old daughter Alice. RANDALL Alice was originally born as a quadriplegic, had no motor functions in her arms or her legs, or in fact in her neck muscles either. After two to three years of conductive education, that we as parents financed ourselves, Alice now has movement of her upper body. We know from our experience with the conductive education that she will, if she continues with the therapy, with the regime, she will be able to walk albeit that she will have to sticks or maybe have to have some kind of aid but it will certainly give her the independence she needs. YATES Forty different organisations in the UK now offer conductive education and there are about a hundred fully qualified practitioners - so called conducters. Here at the National Institute for Conductive Education in Birmingham adults with neurological motor disorders like Parkinson's Disease and Multiple Sclerosis are practising the techniques. ACTUALITY FROM THE INSTITUTE KENELLY My name is Jean Kenelly and I come from Stafford and I've had Parkinson's for about 14 or 15 years, though it's only been diagnosed for 12. And I've been coming here for two years. We do movements that help us with walking, movements that help with the control of our fingers, our arms, our shoulders. In fact all the movements that we do in our everyday life we do without thinking about them, here we're taught to think about what we're doing so that we have control over our movements. YATES Jean is one of six people in this class where they're repeating exercises like bending their legs, rolling from side to side and sitting up and lying down. And each movement is accompanied by counting. Melanie Brown is the director of rehabilitation. BROWN That's based on the general connection that we all have between our language, our thought and our action. One example of a sort of task that we do would be holding a pencil from between your thumb and index finger, that for somebody with Parkinson's Disease is a very, very difficult movement and as they're moving the fingers we're consciously thinking about the movement, so we would talk our way through the fingers - so index, middle, ring, little - and what we're doing is we're connecting a language process with the actual movement. KENELLY I was out shopping with my husband once and I came to the top of an escalator and my brain said you can't get on this thing, there's no way you're going to get down. And I had to count - one, two, one two - and I was on the top step and then I was off the bottom. It really does work, really does. YATES Whilst adults like these say they are benefiting many doubt whether conductive education for disabled children is really effective. Although some local authorities fund courses for children Peter Randall hasn't managed to persuade his to foot the bill forAlice to go to a special school, instead she's been offered a place at a mainstream school with input from physio and occupational therapy specialists. Peter's convinced that's not enough, which is why he's offered to sell his kidney to raise the money needed. RANDALL Because we are so convinced that the conductive education route is the way to go then I'm prepared to do this for that very reason. ROBINSON Peter Randall ending that report by Will Yates. Well Andrew Sutton is the director of the Foundation for Conductive Education in Birmingham, he's in ourBirmingham studio and Dr Richard Morton, a consultant paediatrician specialises in working with children with disabilities in hospitals in Nottingham and in Derby and he's in ourNottingham studio. Dr Morton some commentators described what happened after that documentary - Standing Up For Joe - was broadcast as little short of public hysteria, tell me what you remember of that time. MORTON Hello, yes I indeed remember that it was a time when parents were completely confused - they had children with cerebral palsy, they were trying desperately to do the very best for them, they felt that they'd got the best with their physiotherapist locally and here they were being told that they could do more for their child if only they could take them out to Budapest. They were completely confused about what to do to raise money and thinking that they weren't doing enough for their child. And it wasn't a nice time for the physiotherapists working with the child too because they felt some false claims were being made and what they were doing for the children in their care was being undermined. ROBINSON Andrew Sutton, looking at that documentary again today - I watched it this morning - what's striking is the extraordinary claims that were being made for conductive education really without a shred of evidence. Could you tell us briefly, if you can, what was the story after that went out. SUTTON Well what happened after it went out, as you said, there was a flood of letters to the 91Èȱ¬ and extraordinary interest amongst parents, many of whom were confused and many of whom were certainly not confused - they were very clear about what they wanted and why they weren't happy with what they were getting. For a while the story was kept alive because people going to what was then behind the Iron Curtain was very newsworthy and it was kept alive by the enormous controversy that was generated from some of the existing professional institutions. A lot of people went to Budapest for a couple of years, three or four years, and then people began to realise the Iron Curtain was beginning to topple, Budapest was a long way away, this wasn't very satisfactory, they wanted something at home and people started to try setting up the things over here which has happened in a lot of countries now. ROBINSON What stopped conductive education in its tracks in the UK, as I recall, was a piece of government funded research that suggested that children having conductive education here, at your own centre in Birmingham, were not faring any better and in fact in some cases fared worse than children with access to the best that conventional therapies had to offer. SUTTON Well that was certainly one of the factors, that piece of research has now been thoroughly through the academic mangle and has come out the other side. But it was only one of the pieces of - one of the factors. One of them was that things can only stay in the news so long and obviously the media get fed up with them, the recession came along at the beginning of the '90s and then to a large degree the existing system deliberately ignored it, turned its back, sucked its wounds, didn't look to see what baby might be in there with the bath water and inclusion came along and great new promises were made, vastly new promises were made, which are now being worked through in their own turn and people are wondering what comes next. ROBINSON Okay. Dr Morton the promise in the documentary and I'm quoting was that "brain damage could be overcome because the brain can re-route functions through parts of it which remain intact" - is that really true? MORTON Well a bit of it is true but unfortunately when you have damage in the brain it is a permanent problem, it does limit the sort of things that a child can do if they've got cerebral palsy, it does limit the amount of movement they can have in their arms and their legs. But they have a limited potential, the whole idea of therapy is to recognise they have a limited potential but to work with therapy, conductive education or whatever to achieve that potential. ROBINSON So what do parents - Joe's parents - feel 20 years on? They stayed in Hungary with Joe for nine years, they've been back in this country for nine years now, Joe is 23 and he goes to a Scope school for people with physical disabilities. We caught up with the family in Cromer on the Norfolk coast and ourreporterSarah Woolman spoke to Joe's father - Michael Horsley - and she began by asking him if he thought it was fair to put Joe through the distress that we seemed to see in the documentary. HORSLEY One understood immediately that here was somewhere that could help, that was helping and that those tears were not tears of pain. The crying stopped very quickly and the expectations - yes it was hard work, he had eight hours at the Peto Institute, Monday to Friday, in which every point of that day was structured from physical morning exercises on those famous slatted beds, the holding on to bars, being made to support himself while sitting on a seat, hanging on to a bar. The eating, the drinking, the toileting - everything was so structured to his needs, it was a very personalised programme within a group context. This was and remains the most extraordinary piece of education that I've ever seen. They had huge expectations - of course they had - and that I think is the essential difference. I think it's a question of belief, you don't see the sense of people believing that anything is really possible to do, there was a knowledge that there was something possible to do - that's the essence for me. WOOLMAN So what were your reasons for coming back to the UK after nine years? HORSLEY Practical reasons - Joe was getting too big but also Lewisham Education who were funding the cost of the Institute decided to pull the rug - they didn't want it anymore. Also Joe needed orthopaedic surgery, so we had to come back for that. So there was a combination of factors, nine years is a long time, I think we did become very tired, very exhausted. I'd like to add we now deeply regret that decision because we realise just how much is lost, we clearly see where he was when he was 14 and what he was doing with his hands, which are now totally dysfunctional, and arms. I think that wouldn't be the case if he'd stayed on. We have video film of him sort of walking supported by a couple of conducters up and down the corridor, charging along, laughing, singing - well I think that would have continued and we deeply regret that. WOOLMAN Joe attends a Scope school at the moment, he's 23 years old, what's his weekly routine like in terms of physiotherapy and education? HORSLEY He goes to classes every day in which there is an education programme, I mean there's some excellent people working there but the physiotherapy is ridiculous - half an hour a week if he's lucky. He does live a double life - ScopeCollege, that he's at, Meldreth Manor - he doesn't wait there, they don't assist him to walk, there are all safety rules and regulations - safety in the workplace that prevents carers from helping people, so he's hoisted everywhere. The first thing we do on a Friday evening when he comes home is take him out of his wheelchair and he stands and he will stand with assistance, with us, and he will stand and he will do all the things without hoists, that he has to do with hoists at the college, and he seems to manage to handle this dual life. He is a 100% incontinent at the college, he is a 100% continent at home. He will tell us when he wants to go to the toilet and we take him to the toilet, at the college they put pads on everyone because that's what one does with people with that degree of disability - one wears continence pads all the time. We fought the battle, we've lost it, they won't try to duplicate what we do at home, they can't, they don't have the staff. It's not that I'm criticising them because there's some wonderful staff but they wrap him in cotton wool and this is the big tragedy, I think this is being repeated up and down the country and that makes me very angry and very sad. ROBINSON Michael Horsley. Dr Morton, Joe never did walk unaided and yet obviously his parents still believe that what they did was very much worthwhile. But given the exodus of wealthy Europeans to Budapest if conductive education had worked wouldn't there be armies of people standing up for Peto? Where are they all? MORTON Well firstly you've got to admire Joe's parents haven't you for their tremendous commitment they've had to their son. And I personally think from not knowing Joe, but he probably has achieved very much of his potential. It's very difficult for parents sometimes to accept that this is a problem that's going to continue, there are limits to what can happen but of course Joe's parents are working with conductive education, there are other parents who are extremely satisfied with what is going on in this country with physiotherapists, nurses, doctors, occupational therapists intensively to work with the child to achieve their potential. Now we don't say that anybody is going to achieve more than their potential, what we want to do is to get them to do as much as possible. And in fact conductive education is used quite a bit in places up and down the country, not intensively but it's part of a package of other therapy that children get. ROBINSON Andrew Sutton. SUTTON Yes, well firstly I'd like to say I totally agree that nobody's re-routing things through the brain. Conductive education's about learning. Of course there are limits because of the damage and these limits are permanent - absolutely permanent - one recognises this. But along with the limits caused by the structural damage there remains massive unrealised potential to learn if the person is properly taught. I know that some people have unrealisable aspirations and I know a lot of people have absolutely disappointed expectations of what their young person - their child or their young adult - can achieve. I know one can go over the top with expectation, I know such things happen but if people are properly taught, if they're motivated, if potential is created then there's far, far more in most people than is generally recognised and generally worked towards, that is what people go to conductive education for and that's what many of them come away having briefly tasted and experienced. The problem is that they have to fight to get there and when they do briefly taste it they rarely get more than a taster because it's almost impossible in this country to provide a fully funded service. ROBINSON We must leave the discussion there. Thank you very much for joining us Andrew Sutton and Dr Richard Morton, thank you both. Back to the You and Yours homepage The 91Èȱ¬ is not responsible for external websites |
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