It gives you belief, hope and a 'never give up' attitude... charity inspired by pioneering treatment celebrating 30 years As the Cold War simmered in 1980s Europe, one Birmingham family made a pioneering journey through the Iron Curtain to the Eastern bloc in the hope of helping their disabled baby boy. ALISON STACEY reports.
But one night their lives changed when a documentary called 'Standing up for Joe' was aired on the BBC. The programme showcased the work of conductive education pioneered at the Peto Institute in Budapest for helping disabled children and adults.
It told the story of five-year-old Joe, a spastic quadriplegic who had been practically written off by doctors in the UK, and told he would never walk, talk or do anything for himself.
The TV crew followed the family's journey to Hungary as they appealed for a place at the Peto Institute, where disabled children were given holistic therapy to maximise their development.
We went naive and just what and us, to there is in this Paul The show would be the first glimmer of hope for many families, and would revolutionise disability teachings in the UK.
"They always told Ben what he couldn't do, not what he could do," said Paul.
"He was moving towards school age, and there was a lack of anything for him.
"What happened that changed us completely was that we found conductive education.
"My wife said, 'I want to watch this programme tonight',' and we just thought wow."
In September 1987 The Birmingham Institute of Conductive Education was established with 10 children including Ben.
The following year the children, their families, and teachers went to Hungary for six months to start learning through conductive education.
"We became a conductive family," explains 66-year-old Paul.
"We went from being naive and listening to just what the doctors and professionals told us, to realising that there is better things in this world.
"Some people started seeing us as troublemakers, as we started to ask questions.
from being listening to the doctors professionals told realising that better things world.
"We started hearing about Budapest and all the impressive stories that were coming back, and we were told 'don't expect too much.' .' "But from that moment we'd found something that resonated with us, and not only did it help Ben, but it helped the whole family."
Kelly." Previously children had often just been given physiotherapy to move their limbs, rather than linking this to their education.
But conductive education is based on a belief that those with motor disabilities have the capacity to learn and develop through holistic teaching.
For the Kelly family, who had finally been given the hope and understanding, one of the biggest hurdles was accepting that despite the new treatment, Ben still may never learn to walk.
"There was a misunderstanding that we had as a family, and it was based upon Standing up for Joe.
"The first question we asked the Hungarian conductor was 'can you get him walking?' We were tunnelled vision at the time.
"Now conductive education is not just about the legs, it's about the whole, and everyone has different potential.
"Getting people and ourselves to understand that Ben might not walk was one of the biggest things we had to learn. But instead, learning to do other things that were just as important, picking up a cup, talking, and the development of the brain."
In 1995, after conductive education began to flourish in Britain, Princess Diana officially opened the new 'National Institute of Conductive Education' (NICE) in Moseley following a national appeal.
Nestled in the leafy grounds of Cannon Hill Park, the NICE building is still the home to the charity, and the heart of conductive education in the Midlands.
The centre provides services for adults and children with a range of disabilities and neurological motor disorders, including cerebral palsy, stroke, Parkinson's and rare genetics disorders.
Ben, who is now 35 and lives in Erdington, still comes to the centre every week to continue to maintain and develop his motor and language skills.
Ben said: "They said I wouldn't talk - they got that wrong!" "First of all they got me talking. Then they got me feeding myself.
"If it wasn't for here I would be all tight. I certainly wouldn't be talking like I am now."
Ben explains the centre has been vital throughout his life, not only for his physical skills he's developed, but also for his own mental well being.
"I'm still coming here all these in myself and hope," said Ben who plays in a wheelchair football league at Aston Villa and also DJs at disability discos.
"Can you imagine where I'd be if I hadn't? It's about keeping what I've got and building on it.
"People who have had conductive education, you can spot them a mile off. They have a certain 'never give up' attitude."
Sadly the charity, which provides vital specialist services for hundreds of people across the Midlands, will no longer receive its annual grant for adult services from Birmingham City Council due to mounting pressure to make financial cuts.
This will leave NICE with a huge PS164,000 funding gap, making it more reliant on donations to continue to provide its services for local disabled people.
NICE's CEO Dr Melanie Brown added: "It's a philosophy of humanity. It's challenging people to know that you can do more, every single one of us can, but here it's applied to disability.
"It's based on an idea of developing things that are important to you, to make you a successful member of society and getting the best out of yourself.
"Does that mean everyone with cerebral palsy will walk? No. It's about constantly learning more and more.
"After more than 30 years I'm still astounded by the achievements of our children and adults, and to see the sparkle behind their eyes."
hope " "We went from being naive and listening to just what the doctors and professionals told us, to realising that there is better things in this world. Paul Kelly
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|Publication:||Birmingham Mail (England)|
|Date:||Sep 17, 2018|
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