Stories of empathy on public health, children with special needs and palliative care Premium

Shattering the ‘wall of indifference’, three writers narrate their experiences and bring forth first-person accounts on why society has a responsibility to help those who need it. They talk about the importance of providing holistic comfort and care

Narratives of illness, disability, and care can give us a deep understanding of the context and circumstances of people’s lives. Such understanding can help to enhance societal support for patients and families. Three recent books cast a light on the areas of public health, disability, and palliative care.

In This Kind of Child: The ‘Disability’ Story, K. Srilata brings together the voices of persons with special needs, their families and caregivers in a collection of first-person accounts, short stories, and interviews. Any parent with a child who ‘doesn’t fit’ into the school system is likely to have heard the uncomfortable phrase ‘this kind of child’, which is actually a form of labelling. Unfortunately, in India, any accommodation for those with special needs are turned into a matter of discretion based on sympathy and saviourism. It should be a matter of legitimate rights and systematic adjustments of the environment in educational institutions, workplaces, transport, and public spaces, empowering persons with ‘disabilities’ to live full and productive lives, as independently as possible, in the midst of society.

“In the charity model,” writes K. Srilata, “it is the person with the disability who comes to be seen as ‘the problem’, as ‘helpless’, as needing care, sympathy, and protection.” She quotes the Union of the Physically Impaired Against Segregation which declared in 1976, “In our view it is society which disables physically impaired people. Disability is something which is imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society.” Both the charity model and the medical model should be replaced by a social model of acceptance.

In her memoir of a lifetime of medical practice, A Luxury Called Health: A Doctor’s Journey Through the Art, the Science, and the Trickery of Medicine, physician Kavery Nambisan turns a reflective lens upon the medical profession itself.

After medical training in England, Nambisan began her career in a hospital in Mokama, a small town in Bihar. “It is best known as the home of dacoity in and outside the State… an unpredictable world of violence and peace, of Bhumihars and bonded labour, child brides, courteous men with guns strapped at the waist, the trusting and the untrustful.”

Nambisan writes about seeing a peculiar kind of epidemic, one that disproportionately seemed to affect young married women: an epidemic of burns, “as common as gunshot injuries, and more tragic.” These are medico-legal cases, but invariably, the story that is presented to the authorities is that a stove burst had caused the burns. “Why were the victims of burns young, married women every time,” wonders Nambisan with heavy irony, “And why did the stoves not burst when an unmarried daughter of the house or an older woman cooked?”

Pain and palliative care are the subject of Walk with the Weary, the autobiography of palliative care pioneer Dr. M.R. Rajagopal. Rajagopal’s own life story takes only a few brief chapters. At the age of three, he was sent to live in a village with his grandparents because his father had wanted a daughter instead. This early sense of being unwanted stays with him.