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”.
----------------------------------------------------
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
__________________________________________
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)
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