Wednesday, 28 August 2013

Silencing the Lambs--Hysterectomies and Human Rights of the Disabled

Farheena was just 10 and a half when she attained puberty. Doctors told her mother Farida Rizwan to get a hysterectomy done. Because Farheena is a special needs child--she has cerebral palsy and some mental retardation.

“I was told a hysterectomy will help me avoid all the hygiene issues surrounding her menstruation,” said Rizwan, who was based in Byndoor, a coastal town in Udupi district in Karnataka, at the time. The mother later found out that some local parents had already done the uterus-removal operation for their own young, special needs daughters. But she refused. “I kept asking doctors what side effects she would experience if they did such a surgery at her age. I never got an answer,” said Rizwan.

Today, Farheena is 18. She lives in Bangalore with her mother and older brother Rayyan (22) and she attends a special-needs school in south Bangalore. The teenager is active on FaceBook, plays games on her mother's iPad and remarkably, for a special-needs person, manages her menstrual cycle on her own. “It took me a while but I showed her how to use sanitary napkins, made her understand I experience menstruation too. She freaked out at first, but with time, the fear has ebbed away,” explained Farida.

Whose womb is it anyway?
The Census of 2001 states that there are 9.3 million disabled women in India. Farheena is one of them. But she is luckier than most because her mother wants her to live with dignity. India is a signatory to the United Nations Convention on the Rights of Persons with Disabilities 2008 (UNCRPD) which guarantees all intellectually disabled women “the right to full bodily integrity”. But it has been a common practice to conduct hysterectomies or sterlisations—operations to remove the uterus (and at times, the ovaries and cervix too)--on mentally challenged girls. Parents who can afford the Rs 25,000 to Rs 50,000 price tag of such operations, get it done on their disabled daughters. Or state agencies carry out sterlisations on mentally challenged girls/women living in Government run Homes or Shelters or Institutions for the destitute.

According to Shampa Sengupta, Director, Sruti Disability Rights Centre (SDRC), Kolkata, who has been working on disability rights for 25 years, forcible hysterectomies are a violation of human rights, apart from the legal, moral or ethical issues raised by such procedures. “It is a denial of a woman's basic right—her right to bear a child”. And what happens when girls as young as nine to 12 are sterilised? There really is no specific study in the Indian context. However, the Hysterectomy Association of the UK (www.hysterectomy-association.org.uk) says some of the risks associated with hysterectomies include pelvic inflammatory disease, endometriosis, depression and back pain.

A history of hysterectomies
The practice of forcible hysterectomies became public in 1994, when it was learnt that the operations were conducted on several mentally challenged women between 18 and 35 years of age at the Sassoon General Hospital in Pune. A February 26, 1994 article in the British Medical Journal on the controversy, states... “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...” That was the same reason given in 2008 when the Maharashtra Government sought to conduct hysterectomies on the 330-odd inmates of five Government-run Homes in the state.

Ironically, in the early 1990s the Indian Journal of Medical Ethics laid out “suggested guidelines” for hysterectomies in mentally handicapped women. The recommendations included setting up a panel—comprising a qualified psychiatrist, one clinical psychologist and a social worker with experience in problems faced by the mentally handicapped—to examine the disabled girl/woman. The guidelines stressed, that “hysterectomy in the absence of a conscientious effort at helping the woman to maintain personal hygiene cannot be justified.”

But what can such panels or review bodies actually achieve? Akhil Paul, Director of Sense International India, an Ahmedabad-based NGO which works with deafblind children and adults, pointed out: “the panel can only take action if a complaint is made about hysterectomies or any surgical intervention carried out on disabled girls or women”. Besides, as Sengupta noted: what is unspoken is that “hysterectomies are often carried out so that the girl/woman does not become pregnant if she is abused.”

A conspiracy of silence
So, do hysterectomies serve to merely perpetuate the sexual abuse of disabled girls/women? Akhil Paul pointed out that both parents and civil society at large remain silent about abuse and the hysterectomies (and abortions) that result from abuse. “Often, the abusers are people who work or mingle with them in their day to day life (autodrivers/rickshaw-wallahs, co-passengers in buses), or even, their peers,” he said.

Earlier this year in May, newspapers reported that five hearing and speech-impaired girls from a Government Girls' home, were allegedly raped and beaten by staff at an NGO-run speech therapy centre near Jaipur. The case is still under investigation.

Last year in July, a young woman's body was found buried within the compound of a NGO-run home, Dulal Smriti Samsad in Hooghly distrct, West Bengal. The body was of Guriya, a mentally ill destitute woman. Shampa Sengupta was one of those who investigated the incident.
The Home, it emerged, was registered under the Persons with Disabilities Act, the National Trust act and the Juvenile Justice Act. Yet it was not monitored by any government agency. “Many inmates (mostly mentally ill and destitute women) had been subjected to routine sexual abuse, some even had Copper-T (a common contraceptive method) inserted into their bodies,” she said. Outsiders were the abusers. The hapless women had been unable to express themselves, given their mental condition. Worse, those they did narrate their plight to, chose not to believe them.

What happens when the abuse is at home? Sengupta said often, the abuser is a close family member—either the father, a sibling, a relative or a family friend. “Many doctors have told me how they have carried out hysterectomies on mentally challenged girls, at the request of the girls' mothers. My own gynaecologist said a mother had brought a disabled girl to her for an abortion. Some mothers do know their daughters are being abused, but keep quiet,” Sengupta stressed.

Standing up, speaking out
Farida Rizwan, though, has vowed not to stay silent. 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 inapprorpriately. Who will help that girl,” Rizwan asked.

This award-winning blogger remains vocal on abuse, hysterectomies and disability. And one thing Rizwan is very sure of: “Removing her uterus will not protect my daughter”.
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BOX
India's Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, which is now in force, is silent on the violence/sexual exploitation disabled women face.

However, a Draft Rights of Persons with Disabilities Bill 2012 is ready. Some of it's positive policy directives include:
The right of women and girls with disabilities to be protected from all forms of abuse, violence and exploitation.
* So the authorities concerned must provide protection in all settings including homes, care-homes, educational institutions, and workplaces.
* Provision of safe, accessible complaint mechanisms to report such abuse, exploitation, violence
* Provision of gender, disability and age-sensitive protection services; assistance/support for victims of abuse, and so on.
Source: Sense India
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Farida Rizwan's blog: http://www.blogadda.com/blogs/Chapters_from_my_life-FaridaRizwan/

(This article is the unedited version of my piece published in The Hindu on August 4, as 'The Silenced Wombs'. The piece appeared in TH's special Sunday page titled 'The Yin Thing'. 
http://www.thehindu.com/features/the-yin-thing/the-silenced-wombs/article4985813.ece)