The Hindu Business Line : Redefine achievement

Kate Tebbett's Management of Cerebral Palsy, from Sage (www.indiasage.com) is special in more ways than one. It is the first publication documenting the work at Vidya Sagar (formerly Spastics Society of India, Chennai). Also, it describes `the transdisciplinary approach to working with people with disabilities'.

Transdisciplinary approach banks on professionals of various disciplines `to accomplish a common set of intervention goals for a child and her family'. The essence of the concept is that services to the individual with multiple disabilities should be integrated, explains Tebbett. And as Poonam Natarajan, Director, Vidya Sagar, puts it, transdisciplinary workers can support mainstream education and increase support `in places where none exists'.

An important read in the book is the list of `underlying beliefs about management of cerebral palsy'. The first of these reads, "Individuals should be supported so they are able to achieve their full potential. Professionals should not concentrate on things that these people cannot and may never be able to do, but should let them move on and achieve what they can."

Second, "Make the quality of life as rich as possible for the student and his/her family." Ensure that the children look forward `to a life of good experiences' rather than dread `a life of therapy'. Three, "Learning takes place in all sorts of environments, during all sorts of activities." Which means, "Performance of daily activities should incorporate therapy as far as possible."

Four, "Facilitate the family to function as a family, not a medical team." How so? By enabling the family to be `as natural as possible in their interactions'. The fifth belief emphasises that children with disabilities such as cerebral palsy CAN achieve things. "Look critically at what matters to these children," urges the author. Redefine your understanding of the word `achievement,' she exhorts.

It is distressing to learn that India has the largest number of disabled people in the world: 70 million or 6 per cent of the population, or roughly equal to the population of the UK! "Although the national average literacy for India is 56 per cent, among the disabled it is estimated to be only 25 per cent, with only 8 per cent of India's disabled children in full-time education. Even more significantly, the rate of unemployment amongst the disabled is over 99 per cent." Daunting numbers, these are, but transdisciplinary approach may have the antidote.

But, first, what qualities should a transdisciplinary worker have? Foremost need is "sufficient depth of knowledge in physiotherapy, occupational therapy, speech therapy and special education to assess an individual's needs, and plan and carry out an integrated programme." The worker should know his own limitations and refer appropriately back to the medical team for `specialist advice and inputs'.

The worker should realise `the importance of self-esteem for the children', and also have a clear understanding of normal development and the concept of life roles. Tebbett cites Catherine Trombly's theory of life roles which says that a person's life is made up of roles that fit into the categories of self-maintenance (daily living tasks), self-enhancement (play or leisure), and self-advancement (work or study). "Each individual may define his/her roles differently, and those roles may overlap in some areas, but in the centre there is the individual."

Working with the disabled and their families, transdisciplinary workers can help prioritise the needs of the disabled, and frame the families' expectations. For, it is necessary to help the disabled `become emotionally mature, where they can take success and failure,' concludes the author.

A book that reminds us that inability to understand the disabled can be a bigger disability.

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