Does the presence of disability mean the absence of rights? Divya Sreedharan reports on how hysterectomies are often forced on disabled women.

Farheena was just 10 and a half when she attained puberty. Doctors asked her mother Farida Rizwan to do a hysterectomy on Farheena. To stop her periods. Because Farheena is a special needs child — she has cerebral palsy.

“I was told the hysterectomy would help avoid hygiene issues during menstruation,” says Rizwan, who lived in Byndoor, a coastal town in Udupi, Karnataka, at the time. Other parents nearby had removed the uterus of their own young, disabled daughters. Rizwan refused. “I asked doctors about the side effects of such a surgery on someone so young. I never got an answer,” she says.

Farheena is 18 today, lives in Bangalore with her mother and brother, and attends a special needs school. She is active on Facebook, plays on her mother's iPad, and manages her menstrual cycle on her own. “It took a while but I showed her how to use sanitary napkins, made her understand menstruation. She freaked out at first but with time the fear has gone,” says Rizwan.

The 2001 Census says there are 9.3 million disabled women in India. Farheena is one of them. She is luckier than most because her mother fights for her right to live with dignity. India is a signatory to the United Nations Convention on the Rights of Persons with Disabilities 2007, which guarantees all intellectually disabled women “the right to full bodily integrity”. But it is common practice to conduct hysterectomies or sterilisations on mentally challenged girls, both by parents and by state agencies in government-run homes or shelters.

Denying basic rights

According to Shampa Sengupta, Director, Sruti Disability Rights Centre, Kolkata, forcible hysterectomies are a violation of human rights, apart from legal, moral and ethical rights. “It’s a denial of a woman's basic right — her right to bear a child”. What happens when girls as young as 9 or 12 are sterilised? There is no specific study in the Indian context but the Hysterectomy Association in the UK lists some of the risks as pelvic inflammatory disease, endometriosis, depression and back pain.

The practice of forced hysterectomies became public in 1994, when they were found being conducted on mentally challenged women between the ages of 18 and 35 at Sassoon General Hospital, Pune. A 1994 article in the British Medical Journal said “...health authorities claim consent was given by the women's parents or other lawful guardians and that the operations were done to maintain the women's hygiene during menstruation...” The same reason was cited in 2008 by the Maharashtra government seeking to conduct hysterectomies on 300-odd women in five government homes.

This, in the face of guidelines laid down in the early 1990s by the Indian Journal of Medical Ethics that recommended setting up a qualified panel to examine the girls. The guidelines stressed that “hysterectomy in the absence of a conscientious effort at helping the woman to maintain personal hygiene cannot be justified”.

What can such panels actually achieve? Says Akhil Paul, Director of Sense International India, an Ahmedabad NGO that works with deaf-blind children and adults: “The panel can only take action if a complaint is made.”

The real picture

But what’s worse is what’s left unspoken. Hysterectomies are often carried out, as Sengupta notes, so that the girl does not become pregnant if abused. It’s a larger conspiracy where parents and society stay silent about the abuse; and about the hysterectomies or abortions after the abuse. Says Paul, “Often, the abusers are people who meet them everyday. Auto drivers, rickshaw wallahs, family and peers.”

Do hysterectomies then merely perpetuate the sexual abuse of the disabled? Last July, a young woman's body was found buried within the compound of the NGO Dulal Smriti Samsad in West Bengal. It was that of Guriya, a mentally-ill destitute woman. The Home, although registered under the Persons with Disabilities Act, the National Trust Act and the Juvenile Justice Act, was not monitored by any agency. Sengupta was one of those who investigated the incident. “Many women had been subjected to routine sexual abuse, some even had Copper-Ts (contraceptive) inserted in their bodies,” she says.

And what happens when the abuser is a family member, a father, sibling, family friend or uncle? “Many doctors speak of carrying out hysterectomies on the request of the girls' mothers. My own gynaecologist has told me of a disabled girl brought in by the mother for an abortion. Some mothers know their daughters are being abused but keep quiet,” Sengupta says.

Farida Rizwan, though, has vowed not to keep quiet. She is fully aware of how vulnerable her daughter is. “One day, Farheena told me her classmate (a girl) had grabbed her breast. Farheena knew this was wrong because I have taught her about 'good' touch and 'bad' touch. But what about the girl who touched her? Someone must be abusing her which is why she touched my daughter inappropriately. Who will help that girl?” she asks. Award-winning blogger Rizwan is vocal on the issue of the rights of the disabled, and one thing she is sure of: “Removing her uterus will not protect my daughter”.

Silent ConspiracyIndia's Persons with Disabilities Act, 1995 is silent on the subject of violence towards and sexual exploitation of disabled girls and women. Now, a Draft Disabilities Bill is ready. It strongly advocates:

The right of women and girls with disabilities to be protected from all forms of abuse, violence and exploitation.

Protection in all settings including homes, care-homes, educational institutions, and workplaces.

Safe, accessible complaint mechanisms to report abuse, exploitation, and violence

Setting up gender-, disability- and age-sensitive protection services. And full support for the survivors of abuse.

Source: Sense India