Sitting on a cot outside her house, 40-year-old Malan is waiting for her mother to come home. She is wearing her favourite floral blouse and an ankle-length skirt. She looks at me, her face lighting up. She has recognised me from a previous visit. “Aai nahi ghari [Mother is not at home],” she tells me as I sit on the doorstep to the family’s two-room house of bricks, stone and mud.
Malan More lives in Wadi village with her mother, 63-year-old Rahibai, and 83-year-old father Nana (their names, and the name of the village, have been changed). The village is in Mulshi taluka of Pune district, where the family cultivates paddy, wheat and vegetables on roughly three acres of land.
When Malan was around 18, she was diagnosed with ‘borderline mental retardation’ at the Sassoon General Hospital in Pune.
For 12 years before that, she had attended the local state-run primary school. “All her classmates cleared Class 4 and moved ahead, but she did not go beyond scribbling on the ground,” says Rahibai. “Finally, the class teacher asked me to take her out of school.” Malan was then around 15 years old.
Since then, Malan spends her days doing small chores in the house along with her mother, but only at whim. She barely talks, and when she does, it is usually only with Rahibai and few others. But she can comprehend and communicate. When I spoke with her, she nodded, smiled and spoke fleetingly.
Malan had her first period when she was around 12 years old. “There is blood,” is how she described it to Rahibai that first time. Her mother taught her how to use cloth pads. “But my son was getting married and there were wedding rituals being conducted in the house. So, like me, she also started ‘sitting outside’ [during her periods],” Rahibai says, referring to restrictions like not entering the kitchen and remaining in one corner of a room. Her mother was Malan’s only source of information on handling periods, so she simply followed Rahibai’s example.
Over time, Rahibai was advised a hysterectomy for her daughter. “Sometimes, Malan would not get her period for five or six months, and I would be extremely anxious [fearing a pregnancy]. She does not speak much. How would I know if something had happened?” Rahibai explains. “I took her to the family planning [Family Planning Association of India] clinic in Pune [around 50 kilometres from Wadi village] twice to get her tested, the second time in 2018.” A pregnancy test kit is easily available at chemists, but it would have been difficult for Rahibai to access it for Malan.
A hysterectomy or surgical removal of the reproductive organs of girls with disabilities is one of the outcomes of widespread social attitudes that view menstruation as katkat or a problem, along with a scarcity of training on sexuality and a lack of institutional support for disabled girls and women.
The practice first made the headlines in 1994, when hysterectomies were conducted at Sassoon General Hospital in Pune, on intellectually disabled women aged 18 to 35. They were brought there from the Government Certified School for Mentally Deficient Girls, a residential facility in Shirur taluka of Pune district. The authorities argued that this was a way to manage menstruation and the consequences of any sexual abuse of the women.
Pune-based public health activist Dr. Anant Phadke and others filed a writ petition in the Bombay High Court, arguing that the surgeries were performed without consent and even on girls as young as 10 years. The petitioners highlighted the rampant sexual abuse, neglect, forced pregnancies and abortions conducted on disabled women in numerous places. A public outcry followed the petition and stalled the surgeries – but by then at least 11 had already been performed, reports said at the time. Last year, 25 years after the petition was filed, on October 17, 2019, the Bombay High Court passed an order that said the arguments have been concluded and a judgement is pending.
“The doctors at the Pune clinic advised a womb removal surgery [for Malan],” Rahibai tells me. “But I asked them whether they could do a nasbandi [tubectomy] instead of removing the entire womb.”
While the issue of contraceptives and permanent methods of birth control for intellectually disabled women is being discussed at international forums, far away in Wadi village, Rahibai has an innate grasp of her daughter’s needs. Malan’s younger sister (who is married and lives in Pune) and female cousins were also supportive. “Nothing happened during her youth. Why inflict pain on her now? Let it be,” they said. So Malan had to go through neither sterilisation nor a hysterectomy.
However, many parents do opt for this surgery for their disabled daughters, and many residential institutions for intellectually disabled women in India make hysterectomy a precondition for admission – on grounds that the woman will never get married or have children, so her womb is of little use. The procedure solves the problem of helping the girls manage their periods. The decision usually also stems from a fear of sexual abuse and resultant pregnancies.
Some of these concerns are often disproportionate. “Most girls with borderline disabilities can understand what happens during puberty and can be trained to manage self-care during periods,” says Achut Borgavkar, former coordinator of the Pune-based Tathapi Trust, that works on awareness and training sessions on disability and sexuality among parents, teachers, counsellors and caregivers. “But there is no programme [on life skills and sexuality education for the disabled] in our public health and education system.”
In the absence of a robust public healthcare and welfare system, and without consistent support from the family and community, Medha Tengshe says that it is very difficult to protect the sexual and reproductive health and rights of people with disabilities.
“We are also helpless,” says Tengshe, founder member of Sadhana Village, a residential facility for intellectually disabled adults, set up in 1994 (as a registered society) in Kolwan valley, around 10 kilometres from Wadi. (Rahibai is a community worker for the last 20 years with Sadhana Village, earning a small honorarium). “Some 15 years ago, we were able to get dedicated women caregivers who looked after our women residents during their periods and supported them. The scene has changed now. We try and train the women who live here in basic self-care, but sometimes we also cannot manage. And then we have to suggest a surgery.”
In nearby Kolwan village, at the health sub-centre closest to Wadi, the absence of a robust public health support system is apparent. Two male health workers, a male medical officer and two female health workers look away when asked about the reproductive health needs of intellectually disabled women. “We distribute sanitary pads to adolescent girls and women,” says an auxiliary nurse midwife. What else do you do, I ask. They look at each other indecisively.
In Kule village, at the primary health centre nearest to Wadi (around 11 kilometres away), it’s much the same. Suvarna Sonar, an ASHA (accredited social health activist), says there are two girls who are ‘slow learners’ in Kule, and four or five in Kolwan. But there are hardly any special health services for them, she adds. “Their behaviour changes when they reach puberty. We do not know how and what to tell them.”
Article 25 (a) of the UN Convention on the Rights of Persons with Disabilities, which came into effect on May 3, 2008, mandates that ‘state parties shall provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes’.
India has ratified the convention, but it was only in 2016 that the Rights of Persons with Disabilities Act prohibited non-consensual sterilisation of the disabled in India. The Act mandates that the state must ensure ‘sexual and reproductive healthcare especially for women with disabilities’ and ‘ensure that persons with disabilities have access to appropriate information regarding reproductive health and family planning’.
However, even this Act has no specific provisions for the sexual and reproductive rights of intellectually disabled women – or those with ‘mental retardation’, who number over 6 lakh in India, according to the Ministry of Social Justice and Empowerment, over 4 lakh of them living in rural areas.
In most instances, the intellectually disabled are viewed either as asexual or hypersexual. In the quest to ‘manage’ their reproductive health needs, their need for love, companionship, sex and intimacy tends to be overlooked, along with their right to motherhood, notes a 2017 paper on disability and sexuality.
Did you ever consider marriage for Malan, I ask Rahibai. “Some people did suggest it and even brought proposals, but we decided not to get her married,” she says. “She could not even wear a saree, how would she manage her own family? Her [two] brothers also said, ‘let her die here in her own house’.” Rahibai also knew that many women like Malan are unable to adjust to their new life in their husband’s home and eventually return to their parents’ home.
However, says Dr. Suneeta Kulkarni, Pune-based educationist, counsellor and mother of a person with special needs, it is important to recognise that adult women and men with special needs also have sexual rights. “And sex does not always mean intercourse,” she says. “There are so many aspects of sexuality. There is friendship, intimacy, a little bit of flirting or sharing a cup of coffee. But even those spaces are denied.”
Instead, when intellectually disabled adolescent girls and boys express their sexual feelings, most families and caregivers oppose them, many use medicines to control sex hormones, and some severely punish sexual behaviour of any sort. “What do we gain by denying these feelings?” asks Dr. Sachin Nagarkar, who has been working with adults with special needs in Paud village of Mulshi taluka for 15 years. “The sexual urge is a natural and healthy expression. You cannot stop, suppress or deny it.”
Though their own sexual urges are ignored, disabled women and girls are often the target of sexual abuse and assault. Malan and her 38-year-old cousin Rupali (name changed), also intellectually disabled, have both faced harassment and abuse in their youth from the boys in their village. “Some boys would catcall, try and touch them, or come home when no one was around,” Rahibai tells me. She lived in constant fear of such abuse and its consequences.
But Rahibai did not keep her worries to herself. Of Wadi’s population of roughly 940, six have some form of intellectual disability – two women, including Malan, and four males. The women in the self-help group that Rahibai is a member of, have together inaugurated the Devraai Centre for Special Friends in the village’s anganwadi room in November 2019. Here, twice a week, volunteers Mayuri Gaikwad and Sangita Kalekar from Wadi, and Shalan Kamble from Sadhana Village, conduct recreation activities and trainings (including on self-care) for these six ‘special friends’. “Some villagers laugh at us as they feel that teaching these ‘mad’ children is useless. But we will not stop,” says Mayuri.
“Mee keli [I made this],” says Malan, proudly showing me a green-and-white bead necklace she has made as part of these activities.
On other days, back at home, as part of her morning household tasks, Malan fills water from a tap into a drum for the family to use, and has a bath. Then, as always, she spills some tea on the mud stove and gets a scolding from her mother.
Then, in her colourful blouse and favourite ankle-length skirt, surrounded by a family that supports her, Malan is ready to take on the day.
The author is a trustee at Tathapi Trust, where she has worked for 18 years.
With thanks to Medha Tengshe and Vijaya Kulkarni from Sadhana Village, and Achut Borgavkar at Tathapi Trust, Pune.
Cover illustration: Priyanka Borar is a new media artist experimenting with technology to discover new forms of meaning and expression. She designs experiences for learning and play, juggles with interactive media, and also feels at home with traditional pen and paper.
PARI and CounterMedia Trust’s nationwide reporting project on adolescent girls and young women in rural India is part of a Population Foundation of India-supported initiative to explore the situation of these vital yet marginalised groups, through the voices and lived experience of ordinary people.
Want to republish this article? Please write to firstname.lastname@example.org with a cc to email@example.com