Marriage and Reproduction

The issue of Hysterectomies

The public debate on hysterectomies on mentally retarded women housed in institutions is very personal to Damodar Tilak, 76, and his wife Usha, 71. The Pune couple's only child, Nandita, 41, suffers from cerebral palsy and mental retardation and is speech–impaired from birth. When she turned 19, the couple took the “difficult decision” to have a hysterectomy performed on Nandita.

“We opted for the surgery as a last resort,” says Damodar, who has written a book Destination Unknown – A Case Description of A Mentally Handicapped Daughter.

“We realised that with her high level of disability, our daughter would not be able to manage things on her own and would never be able to marry or have children.” But the Tilaks, who even today personally care for their daughter, took precautions like not removing her ovaries so that symptoms of menopause and hormonal imbalance did not set in early.

Opposing a blanket move to conduct hysterectomies on women inmates of mental institutions, Damodar says such decisions must be taken on a case–to–case basis.

An engineering graduate, he gave up his career and dedicated his life to caring for his daughter and working on issues of rehabilitation of persons with mental disabilities.“For another five years we can look after Nandita,” he says. “But we are worried about what will happen to her after that. We may have to take the drastic step of putting her in an institution.”

Nandita needs help to use the toilet, bathe, eat, and get around. The Tilaks have set up a trust, which they hope will take care of Nandita's financial needs in the future. The issue of conducting hysterectomy involves human rights and has medico–legal and social implications. “India has over three crore people suffering from mental retardation,” says Damodar.

“This is almost 3 per cent of our population. Middle–class parents, who cannot afford expensive care, are worst off in such a scenario,” he says.

Source: Anshika Misra, We opted for the surgery as a last resort. DNA, Mumbai, 30 January 2008.