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Locked Out Of Life

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THE DISABLING WORLD [image, unknown]

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Locked out of life
Norman Acton, Secretary-General of Rehabilitation International, has spent the best part of a life-time working with disabled people throughout the world. A profile by Peter Adamson.

Drawing: Richard Willson
Drawing: Richard Willson

A child of about two years lies in a hammock slung across a darkened room somewhere in Asia. A shaft of light falls across her face as the bamboo door of the room swings open. But she neither speaks nor moves her head as the stranger approaches. Her body remains inert, her eyes expressionless, as he stoops over her.

The stranger is Norman Acton, head of Rehabilitation International. He is in the village to research a report for UNICEF on the plight of disabled children in the developing world.

As the story of the child in the hammock unfolds, Acton learns that she had suffered from a fever shortly afterbirth. Her parents were advised that there was nothing to be done except to isolate the child, breaking into her world only to feed her.

The fever passed. But for almost two more years, the child lay undisturbed in the gloom.

`Originally, that child almost certainly did not have a disability', says Acton, speaking now in his seventh-floor office, above but not beyond the noise of the traffic in New York's Park Avenue South, `but today she is truly disabled - mentally and physically. The normal processes of child development simply have not happened'.

Disabling attitudes
As the head of an agency with 115 member organisations serving the disabled in 65 countries, the sixty-one year old Acton is getting ready for a busy new year - a year for which the little girl in the darkened room has become a personal symbol.

`Her story is an extreme example', he explains, `but it shows that attitudes towards disability - and the lack of understanding which surrounds it - can be more disabling than the disability itself.'

Before he can explain further, Acton's voice is overtaken by the undulating shriek of a New York City ambulance arriving at the nearby Bellevue Hospital. `Inside that ambulance', says Acton when the siren has died away `is probably one of the 30 million people who are disabled in traffic accidents every year. That man or woman may now be crippled for life, unable to move around like you or me. But again it is our attitudes, reflected in the design of buildings and transport, which will convert, not being able to move around too well' into `not being able to earn a living, go to the theatre, attend church or visit friends'.

Young children are the main victims of such disabling attitudes. The lost years of the little girl in the darkened room, for example, are blank pages which can never be re-written.

`In all nations and cultures', explains Acton, `the child passes through certain well-known stages of mental, physical and emotional development. It's a building process. The stages of learning to control muscles, to smile, to interact with others, to walk, to talk, to play, to control temper, to learn ever more complex things, to give and to receive happiness, to become a mature person - are all built one on the other. If stages in that development are interrupted or missed out, then the foundation stones for the next stage of development are not laid and all the subsequent stages can be sabotaged. That's why ignorance and misunderstanding can be so shockingly disabling to the young child. And that's why the approach to childhood disability must be based on minimising its impact on the normal processes of child development.'

Excluded children
It was this philosophy which Norman Acton and his Rehabilitation International colleagues took with them on their mission to 14 developing countries to recommend policies to UNICEF which might help to lighten the weight of disability on 150 million young lives.

`The most distressing thing that we found', says Acton now, `was the number of disabled children who are excluded - from school, from play, from family life, from going to market, from religious events, from entertainment, from learning a job.'

`These children are the ones who most need stimulation and involvement. But so many of them are just locked out of life. And as the years go by, they become more and more disabled.'

`Sometimes it's because the parents are ashamed, or because they think their child's disability is a punishment to themselves. Most often, it's because they are poor - already on the brink of existence - and the extra burden is just too much to cope with.'

`So overall social and economic development is vital. But with just a little more help, just a little more trained support for the families of the disabled, so many children could develop normally.'

The costs
But isn't it too much to expect developing countries, with so many pressing problems to devote scarce resources to expensive treatment for a small minority of the people?

`Challenging that idea' says Acton, `is one of the main tasks for the Year of the Disabled. It's not a small minority - it's ten per cent of the population, it's 450 million people in the world, it's 150 million children in developing countries alone. And doing something about it needn't cost the earth.'

`Strategies of basic services to meet basic needs, including primary health care to improve community health at low cost, have been pioneered in some developing countries and are now being widely advocated by UNICEF. If such stragegies really take off, then not only can they bring great benefit to the population in general they can also do a great deal to minimise the impact of disability.'

`Advising on nutrition and organising immunisation programmes for pregnant women and young children, for example, are services which primary health care workers can and do offer. And because malnutrition and illness in pregnancy and the first few months of life are the world's biggest causes of impairments in children, so these services could dramatically reduce the incidence of disability - and at very low cost.'

'If the monitoring of the child's mental and physical development were also apart of the training of community health workers, then many impairments could be recognised much more quickly. And early identification is vital if an impairment - and its impact on normal child development - is to be minimised.'

The most dramatic example of Acton's belief that a lot can be done with a little is that an estimated quarter of a million children lose their eyesight each year from the lack of Vitamin A. That problem could be solved by a daily handful of green vegetables - or by adding Vitamin A to other foods such as tea, sugar or cereal, at a cost of about five cents per person per year.

`But most of the treatment available today in the developing countries' says Acton, 'is based on importing technology and installing it in institutions for the disabled. The benefits from these `cathedrals of excellence' hardly ever touch the lives of the majority.'

`Maintaining the normal processes of child development is the touchstone. And as the family is the principal agent of that development, there is no greater resource available for minimising the impact of disability in the world than a well-advised and well-supported family.'

'I hope that the Year of the Disabled will help to remove the `high cost' label which has been hung around efforts to help the disabled' concludes Acton, `for there is no doubt in my mind that if we begin to pioneer what we have learned, then the incidence and severity of childhood disability in the developing world can be dramatically reduced at a sustainable cost.

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