CHENNAI: While there have been several discussions about menstruation across India, none of it really addresses women with disabilities. The challenges faced by disabled women are different from the rest, and any discussion about women’s reproductive health cannot exclude them. To start a conversation about disability and menstruation, CE speaks to women with disabilities and activists in Chennai to gather their perspective on the topic.
For most girls, the first time they menstruate, they don’t understand the changes happening in their body, and are unable to handle it independently. But societal and cultural stigma about menstruation prevents them from seeking help. In the case of disabled women, it’s much worse as they also have to grapple with a disability and are less likely to have accessible toilets.
Raghavi, HR consultant and founder of The Headway Foundation, recalls her school days when she would never go to the restroom out of fear. “My mom joined the school as a teacher just to take care of me. If any emergency, I would go home,” she says. She has locomotor impairment caused by polio at a young age. When she joined work, she wouldn’t drink water the whole day to avoid going to the restroom which ultimately resulted in UTIs. “I wear callipers from my hip to my foot. It’s a laborious process to adjust with that, and public bathrooms aren’t spacious enough,” she rues, adding that if bathrooms were designed with wider space and a separate support surface, it would be helpful.
Kalaichelvi and Ashwini, both of whom lack power in lower limbs, concur that accessibility of toilets is the major issue. “As it is difficult to go to the bathroom often to change, it would be convenient if a product which required less frequent changes was developed,” Kalaichelvi says, as even discreet disposal of soiled napkins is an issue for those who cannot walk or wear shoes.
Their caregiver explains that in olden days, and even now in rural areas and urban slums, women used rolled-up cloth, which she feels is more efficient for a whole day and does not cause irritation due to chemicals in commercial sanitary napkins. For instance Pavithra Swaminathan, a quadriplegic with cerebral palsy and locomotor disability, prefers diapers over anything else. “Everything depends on my caregiver or mother. If they’re in a hurry, things get messed up. I prefer diapers. It’s safer and needs to be changed every 3-4 hours,” she advises.
“For people with multiple disabilities, the challenges are more because somebody needs to take care of their hygiene,” explains Aishwarya Rao, public health consultant and disability activist. “Women with intellectual disabilities won’t be aware of the monthly cycle dates or realise the importance of maintaining hygiene. Caregiver has to be diligent enough to incorporate menstrual cycles in the care plan,” she advises.
She also highlights how drugs taken for certain co-existing medical conditions can alter the bodily functions. “Medication taken for mobility disorders like cerebral palsy medications or epilepsy, can have long-term effects like heavy bleeding and irregular cycles,” she points out.
Girls with intellectual disabilities may take longer to learn the skills required for menstrual management, and accidents may cause discouragement, depression and averse reactions. Smitha Sadasivan, of the Disability Legislation Unit, Chennai, explains that each woman has to be educated according to her needs. “A person with intellectual disability finds it difficult to understand complex information; they should be taught and trained repeatedly, using perhaps animated videos,” she says. “Menstruation for women with disability is not impossible. It just takes some time and work. If people think about it, it can be done; but no one thinks about it,” she laments.
Hysterectomy common
In the past, monthly menstruation cycles by women with disability was looked at as a burden, and hysterectomy was common practice. As soon as girls would reach menarche, their uterus was removed.
Resources for reference:
www.sexualityanddisability.org
www.secretgb.com/special-girls-business