Arun Shourie on his tale of cerebral palsy and enduring love

The Indian economist and former politician has written a reflective book about life with a severely disabled but dearly beloved son.

The day his son was diagnosed with cerebral palsy, Arun Shourie was working as an economist with the World Bank in Washington. He was later to return to India, where he would become a cabinet minister, prolific author and newspaper editor, who fought corruption and campaigned for press freedom during his time at The Indian Express and The Times of India. At that moment, however, when he and his wife Anita finally learnt there was a reason for the things that had bewildered them since the birth of their son, he was an unknown Indian from an affluent and distinguished family at the beginning of his ­career.

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As they absorbed the news, the kind doctor gave them what Shourie calls the "best piece" of advice anyone could offer: "I have not been to your country but from what I have heard, you have strong, well-knit families there. That is what the child will need as he grows up – a net of love and security." They took his advice and returned to New Delhi. Realising the couple would need help in raising Aditya, the maternal and paternal grandparents took up the job. Shourie says these two elderly couples devoted the rest of their lives to loving and raising Aditya, the "darling of the family".

"That’s why I can’t understand the way Indian families are portrayed in television soap operas – the scheming mother-in-law and the devious daughter-in-law. That hasn’t been our family experience at all," he says, seated in the book-lined study of his home in West End, a tranquil, leafy suburb where India’s elite live behind high walls and riotous bougainvillaea.

Shourie speaks fondly of his mother-in-law, Maltiji, who looked after Aditya for 25 years despite her crippling arthritis. He recalls how she would read him the news, stories, poems and rhymes. She also insisted on teaching him arithmetic.

When Shourie asked her what purpose it could serve since Aditya was never going to use it, she replied: "But just see his sense of achievement when he gets the answer right."

Parents of special needs children in India tend not to talk about them in public. They avoid taking them to parks and restaurants, fearing stares. They keep their personal battles and emotional agonies private.

But Shourie has never wanted to keep Aditya hidden. Now 35, he cannot walk or stand and can see only from the left side of his eyes. He cannot use his right arm or hand and speech is syllable by halting syllable. Yet Shourie and Anita have travelled all over India with their son; eating out in restaurants is one of Aditya’s great loves.

"Thirty years ago, people averted their eyes," says Shourie. "Now he is welcomed in restaurants. Gradually, such children have become more visible in recent years."

Although Shourie has never shied away from talking about his son, he has, nonetheless, been surprisingly candid and unflinching in his intimate and moving account of raising him, in his latest and 26th book, Does He Know a Mother's Heart? How Suffering Refutes Religions.

It reveals a different side to a man who is often accused of being strident and controversial in his political writings, one that many Indians will be unfamiliar with: a tender, devoted and infinitely gentle father who has thought deeply about his son’s suffering.

Much of the book is a meditation on whether the major religions can offer an explanation as to why innocents should suffer, hence the subtitle. Shourie’s sombre conclusion is that no religion can offer a satisfactory explanation.

Writing in a matter-of-fact tone – almost as though he is taking notes and not even properly constructing sentences – Shourie devotes the first part of the book to the double tragedy of his life, recounting how, 22 years ago, as they were coping with Aditya, Anita was diagnosed with Parkinson’s Disease at the age of 42.

In coping with his wife and son, Shourie says that the principle that has kept him sane for the past 35 years, through all the complications and scares over their conditions, has been to "focus only on the task at hand".

"If Adit has to be toileted, then focus only on lifting him out of bed and toileting him," he writes. "If Anita has to be helped change her clothes, then focus only on that."

Nothing can be gained by brooding on the past or imagining future torments, including the obvious question of how Aditya will be cared for when Shourie, 70, is gone.

Nor, he goes on, must parents fall into the trap of wondering when it will become easier, when the chores will end or when the demands placed on them will ease. This, he warns, is what the Auschwitz survivor, the psychiatrist Viktor Frankl, termed "the delusion of reprieve", seen in captives who convince themselves, on the thinnest wisp of hope, that, somehow, they will be selected to live.

While Indian society’s attitude towards the disabled is becoming more compassionate, he finds that the government is still regressive, despite an estimated 40 to 60 million disabled Indians. For a country that prides itself on its information technology industry, he is dismayed that so little attention is paid to improving accessibility, or offering simple gadgets that can improve the quality of life.

For example, since it is hard for Aditya to hold a cup or drink from it, he runs the risk of swallowing too much. A spout would help. Since the spoon he raises to his mouth tends to veer off past his mouth, a bendable spoon would help. Neither was available in India. Wheelchair access in buildings is rare. Public transport is worse. The doorways and aisles of Indian trains are too narrow for wheelchairs. As a cabinet minister overseeing information and technology, Shourie campaigned on behalf of improved access for the disabled, efforts that were abandoned by his successors after he left office in 2004.

One idea was "text to voice" technology for the blind. Another was a sort of "reading rod" that was lighter and slimmer than a Braille book. Yet another was a keyboard to allow access to around 50 regularly visited websites on the internet. This had just nine keys, like a mobile phone. By punching a number on the keys, a blind user could call up the ­websites.

Shourie says that these gadgets make a big difference to people. "Why must we wait for the US to develop these things. Why don’t we do it ourselves?" he asks.

One of the most moving passages in the book is the section where Shourie describes the lessons his son has taught him. They include perspective, as being sacked, receiving an award or promotion, or publishing another book is not of the slightest significance to Aditya. He derives joy from simple things, whether it is a cassette of film songs or an inexpensive south Indian lunch.

In a tone void of any semblance of self-pity, near the end of his story Shourie addresses the worsening of Anita’s Parkinson’s. She used to be able to feed herself but her legs now flail so badly that one person has to hold her legs down while another feeds her.

Shourie remains calm, avoiding the sort of rage, resentment and bitterness that can overcome parents with special needs children. Mostly, he follows the path prescribed by Buddhist teachers for dealing with difficult situations.

"Irrigators channel water; fletchers straighten arrows; carpenters fashion wood; the wise master their minds," he says.

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