While forced surgical procedures may have dwindled, the apprehension of parents has not.
“The common question most parents have is ‘how will we train our intellectually disabled child to manage menstruation’?”, said Bahni Bhattacharyya Mandal, a Kolkata-based special educator.
In the absence of vocabulary and accessible tools around menstruation, parents and caregivers are turning to other intrusive surgical methods, violating autonomy and consent.
More recently they have resorted to surgical options like tubal ligation or contraceptive implants and injections. Tubal ligation, a surgical procedure where the fallopian tubes are either blocked or removed, is used to stop pregnancy permanently. Contraceptive implants, where a small device is inserted under the skin which releases progestogen into the bloodstream and contraceptive injections are also being resorted to by families and medical professionals to stop pregnancies. In most cases, the consent of women is never sought.
“This is largely to prevent pregnancy rather than an acknowledgement of the woman’s own sexuality and agency. Some of these women are over the age of 25-30. Many of them are not made aware of what the procedure they are going through is”, said Mandal.
She told us about two instances in recent times where parents of girls with intellectual disabilities resorted to tubal ligation to stop their menstruation. Neither would admit it on record, says Mandal.
It is a popular misconception that girls and women with disabilities cannot learn to manage menstruation and personal hygiene or are unaware of their sexuality. Activists and educators believe that they can be taught early in their life and in tools they are comfortable with. For older women with intellectual disabilities, it may prove to be difficult but not entirely impossible.
Seema*, a 24-year-old with intellectual disabilities and a student of vocational training at Vidya Sagar Centre for Special Education in Chennai, says that she was able to learn about menstruation quite early with the help of the school and her parents.
“My parents and teachers had shown me what a pad was and how it needed to be used before I got my period in class 9. So, I was prepared”, she says.
“Girls with intellectual disabilities need to be taught in a language that they understand, such as with pictures and images if not words”, said Mandal, who has a daughter who is on the autism spectrum with limited speech. Mandal had begun teaching her since she was eight years old about maintaining hygeine, the frequency of changing and disposal of her sanitary pads among other things.
“There are some girls who have very high support needs. But even for them, hysterectomies are not the solution. The onus is on caregivers to manage it,” says Sangeeta Saksena, the co-founder of Enfold Proactive Health Trust in Bengaluru, which has developed a Suvidha kit for children for personal safety and sexuality education.
While there has been some discussion on building a vocabulary in Indian Sign Language on sexuality including menstrual hygiene management, there isn’t enough focus on Augmentative and Alternative Communication (AAC) — modes of communication other than spoken or oral language which uses gestures, visuals, writing, or a speech generating device — used by people with high support needs, says Balasubramanian.
“There’s barely any conversation and research and development on ways of communicating sexual and reproductive desires for people with high support needs. The initiative is restricted to a few NGOs and neither the union nor state governments have taken this up”, she adds.
Disability friendly infrastructure and products are another hindrance in enabling disabled persons’ exercise their autonomy. Almost all women, living with disabilities we spoke to, said that inaccessible and unhygienic public toilets discourage them from venturing out during their menstruation.
Menstrual products are not designed keeping people with disabilities in mind. Smitha tells us her ordeal as a wheelchair user.
“Because I was in a wheelchair most of the time, the pad would move, and I would not be able to adjust it. I had to use two pads and secure them with safety pins. It was dangerous, as the pins could come undone and hurt me.” she said.
“I would tie a thread tightly around my waist to keep my underwear secure so that it doesn’t move along with the pad”, said Silsila, another wheelchair user based in Guwahati, who works as a project coordinator of Bijoyini, a network of women with various disabilities.
Tools around menstrual and reproductive hygiene also need to be accessible and culturally and scientifically appropriate. Enfold’s material which demystifies sexuality, for instance, is available in screen reader-friendly formats. The Suvidha kit contains visuals, puzzles, games, puppets and charts. It is important that the language should not be stigmatising, says Saksena.
“We need to avoid words that have negative connotations when we refer to private parts or menstruation. We need to avoid words like ‘stain’ and instead say ‘blood that comes on the clothes’”, she said, emphasizing that it is important to language that is respectful of our bodies to caregivers, teachers, and boys.
*Names changed to protect identities
[This report is part of the Spotlight Media fellowship. The fellowship is a collaboration between Rising Flame and BehanBox to report on the violence and exclusion faced by women and trans persons with disabilities in India.
Rising Flame is a nonprofit organisation based in India, working for recognition, protection, and promotion of human rights of People with Disabilities, particularly women and youth with disabilities. It is the Recipient for the National Award for Empowerment of Persons with Disabilities 2019.]