MUMBAI, India – Silence sweeps the classroom of a school on the outskirts of Mumbai, and the girls look up at their mothers for help. The girls, all of whom have a disability, have been confronted with a difficult question: “What is menstruation?”
Half of these girls, a group of eight- to 16-year-olds, have already started menstruating, but the answer evades them.
A 13-year-old girl raises her right forefinger after a few seconds. “Periods,” she says. But when the women activists running the class ask her what periods are, she clams up and fixes her gaze to the floor.
In response, the workshop leaders ask an easier question. “Do boys get periods too?” But the perplexed silence persists.
Vinay Kumar, the 23-year-old activist who has organized this awareness session at the Jidd Special School, says the girls’ response is normal. Many of them are learning about menstruation properly for the first time.
When Parents Want To Sterilize Their Children
Kumar began organizing sessions to educate girls with disabilities about menstruation last year. He was inspired to begin the program when he was posted to a school for children with special needs as part of a Gandhi Fellowship. At that school, he had an encounter that would change the course of his life.
Kumar overheard a mother speaking to the school principal, seeking a recommendation for doctors who could safely and covertly get rid of her daughter’s uterus.
“She has started menstruating, and it is getting increasingly difficult for us to manage her hygiene,” the parent said to the principal.
The principal managed to talk the mother out of the idea of an involuntary hysterectomy, but the conversation plagued Kumar. When he talked to the principal, she told him such queries were routine.
Kumar wanted to find out how common it was for girls with disabilities to be forcibly sterilized. “I spoke to social activists and other school authorities, interviewed parents of special girls, and dug out relevant news reports around the issue,” he says.
“All of my background research … told me that the procedure is common, and there are two major reasons why parents opt for it: Difficulties in menstrual hygiene management for such girls, and fear of rape-resultant pregnancy.”
Forced Hysterectomies in India
The 2011 census found there are 26.8 million people living with a disability in India. Of these, 11.8 million are women and girls.
A 2013 submission from Disabled People’s International to the U.N. Committee on the Elimination of Discrimination against Women states that almost 80% of disabled Indian women are victims of violence, and they are four times more likely than other women to suffer sexual violence. It further states that hysterectomies are often carried out on disabled girls following requests from parents and caregivers.
“Any medical intervention including sterilization without the individual’s free and informed consent is a violation of their integrity and may constitute torture and ill treatment,” the submission’s authors write.
In India, the practice of forceful hysterectomies for disabled women and girls first became public knowledge in 1994 after reports emerged of 11 women with intellectual difficulties being subjected to the procedure.
The women, all residents of a government shelter in Pune in the western Indian state of Maharashtra, were between 18 and 40 years old. It was revealed that the decision to conduct these irreversible surgeries on them was taken by the state government. The women’s guardians had consented to the procedure.
Despite strong condemnation from women’s groups and activists, the state administration maintained that such operations were “standard medical practice” in the case of “severely retarded women.” Dr Shirish Sheth, who performed the procedure, told the press, “I never expected such a controversy. Hysterectomy is an accepted form of treatment in such cases.”
A study conducted by the Oxfam Trust in 12 districts of the eastern Indian state of Odisha, which surveyed 729 disabled women, girls and family members, found that 6% of women with a physical disability and 8% of women with intellectual disabilities had been subjected to forced sterilizations.
Educating Girls to Protect Them From Abuse
“A hysterectomy is not the solution for every disabled girl.” Dr Rishma Pai, president of The Federation of Obstetric and Gynaecological Societies of India, told News Deeply.
“For such procedures, which are often riddled with complications, each case needs to be decided on merit. They should be allowed only in instances where a girl is completely incapable of handling menstruation, and is greatly exposed to the risk of sexual exploitation.”
The situation on the ground is vastly different. Archana Shete, principal of the Jidd Special School, says the practice thrives, and parents often subject their daughters to forced sterilization in cases where the procedure isn’t necessary or medically advisable.
“I know that disabled girls who can manage their toilet hygiene can easily learn to manage their menses independently. All they require is timely guidance and training.”
“The reason why these girls don’t know how to manage their menses is that no one has taught them what menstruation is. Even when they’re in their period, they’re not aware that they’re menstruating. [People] treat it as another disability-related disorder,” Shete says.
Girls whose parents do not seek sterilization are still at risk of physical and verbal abuse.
Shobha Vishwakarma, 45, has a 16-year-old daughter with an intellectual disability. “I never spoke to my daughter about menstruation before the onset of her menarche,” Vishwakarma says. “And when I did, it was probably too late.”
“She just wouldn’t agree to wear a sanitary napkin, and would soil her clothes every time she got her period. It was embarrassing. We have men at home; there are boys in her school.”
She admits she was violent to her daughter when she started menstruating.
“It would break my heart, but I would have to yell at her, beat her up – I didn’t know better. But after her third cycle, she has been using the napkin without much protest,” Vishwakarma is now part of a Kumar’s menstruation education group.
Project Samarth is designed to make sure girls do not have to experience abuse to learn about menstruation, just because they have disabilities.
Program staff asks mothers to teach girls about menstruation from a very young age – preferably when they’re eight or nine years old. The mothers are encouraged to physically how to use napkins at least once a month so that girls, especially ones with intellectual disabilities, remember how to use pads.
Mothers and their daughters are introduced to gynaecologists, who explain how menstruation works, that periods are irregular for the first two years, and how they should approach doctors if their period goes on for more than a week. Gynaecologists were introduced to the program after Kumar realised that mothers seldom approach doctors, even if their daughters have severe menstruation-related problems such as abnormal pain in the legs or periods which last more than a fortnight.
In the first year of Project Samarth, Kumar has introduced 60 girls with disabilities to the process of menstruation. To make the sessions more accessible, he has used comic books, sketches, cartoon videos, Braille, and sign language. He says there was previously no sign for “menstruation” in Indo-Pakistani Sign Language.
“I’m trying to invent a sign gesture to depict the word ‘menstruation,’” he says. “The fact that there isn’t one shows that no one has talked to the girls about it.”
Saying No to Hysterectomies
Meenakshi Sharma, 40, hadn’t prepared her 10-year-old daughter, Kashish, who has an intellectual disability, for menstruation. But Sharma says she didn’t have the opportunity – Kashish started menstruating when she was eight years old.
“At first, I assumed it was something related to her disability. But when she started bleeding each month, I realised she was getting her periods. I tried to teach her how to use a cloth for a pad, but she would be very irritable.”
“Despite making her understand, she would just pull the cloth off, and throw it anywhere she deemed fit – even on the dinner table. I’d feel helpless; I just didn’t know how to help my little girl out. Even today, I wash her undergarments every time she gets her period,” she says.
Sharma adds that after her daughter started menstruating, she was petrified every time she heard of instances of sexual assault against disabled girls. She didn’t want Kashish to become pregnant as a result of rape.
Still, Sharma, who has now been through Project Samarth’s program, says a hysterectomy is not the answer for her daughter.
“I’ve considered my options,” she says, “And I’m no longer scared. I’ll take care of her.”