Cerebral Palsy pangs for a girl child

Cerebral Palsy is a challenge in itself. For the family of a girl suffering from the disorder, it is a cause of concern, when that girl hits puberty. One family decided to go in for hysterectomy- surgical removal of the uterus-to save the girl child from the troubles of menstrual management. But is it ethically violating the rights of the differently-abled child? Or is it a fair choice, as a girl child faces the fear of sexual abuse, which could add to the trauma, over and above her existing mental condition

Many parents prefer hysterectomy or other methods of sterilisation for these girls as they fear sexual exploitation. Physical abuse is common among differently-abled children. What happens when the abuser is a father, sibling, relative or a family friend? Many doctors carry out hysterectomies based on the request of the mother as she does not want her child to go through the added trauma of pregnancy

Lata Jain

Ann Phalgun’s 15-year-old granddaughter Gungun is suffering from Cerebral Palsy (CP). Gungun needs constant monitoring and is not competent enough to manage her personal hygiene. Ann approached the doctors to remove the uterus of Gungun as her menstrual management was an issue. She wants the surgeons to carry out hysterectomy to save her granddaughter, who according to Ann has no prospects of bearing a child. Ann feels that the operation would prevent her from going through mood swings, the discomfort and the indignity of it all.

“I've spent 15 years with my granddaughter. As someone who loves her dearly, I am trying to do the best I can for her,” says Ann. “She cannot do anything alone. She is incontinent; her hands and legs don’t function properly and she can’t communicate. The only thing Gungun can do by herself is breathe. She can lead a dignified life without the added indignity of menstruation,” says Ann.

Ann’s request drew flak from many quarters with many questioning the grandmother for violating the rights of Gungun. Dr Kusuma, who works for several NGOs as an honorary doctor says, “The rights of a person who is differently-abled are not taken seriously. The interest of parents, care takers and other family members takes precedence in those cases. At times, the latter does not even seem to be in the equation. It’s sad but it is a fact.”

Krishna from NGO Praudhi engaged in the welfare of the differently-abled says, “It is really unacceptable that the doctors want to remove a girl's womb simply because she’s differently-abled. Gungun, like any other teenager, has the right to grow up with her body intact and where she can have the same choice as anyone else, to give birth to her own children. Gungun’s human rights are being taken away and this is simply wrong. This case raises fundamental ethical issues about the way our society treat the differently-abled and the respect we have for their reproductive rights.”

But on the flip side, many parents prefer hysterectomy or other methods of sterilisation for these girls as they fear sexual exploitation. Physical abuse is common among differently-abled children. What happens when the abuser is a father, sibling, relative or a family friend? Many doctors carry out hysterectomies based on the request of the mother as she does not want her child to go through the added trauma of pregnancy.

There is not much initiative by schools or family members to educate these children on sex education. They are not aware of the changes in their body.

Jayshree Shah, founder-member of Astitva Foundation said, “Their mental growth is not on par with their physical development. The girls face a bigger risk as they are unaware of the physical changes in their body. In the absence of any learning process from organisations, schools or family - who do not want to touch upon a sensitive issue - many face physical abuse. I have come across such girls who remember how they were abused but cannot recall who the abuser was. Most of the time, it is someone who is either a relative or a neighbour who take advantage of them."