When I first heard about Sumedha’s (name changed) educational qualification attained all by her self-tutoring and homeschooling, my joy knew no bounds. Sumedha, my mother’s friend’s sister, is a 30-year-old woman who has spinal cord paralysis with a positive recovery medical history from respiratory paralysis. Her irreversible condition, despite numerous surgeries, medication and consultation from super speciality hospitals, doesn’t allow her to feel any sensation below her neck.
Attaining womanhood for her was a turbulent ride filled with blood, sweat and tears. Dealing with restlessness, self-agitation, abnormal bleeding, dysmenorrhea, cyclic mood swings every month while being dependent on someone else for your menstrual hygiene management has become a painful part of her normalised routine.
According to WHOs World Report on Disability 2011, more than 1 billion people live their lives accompanied by some disability, which in 2019 have increased to nearly 2 billion, constituting 37.5% of the global population. Nearly 1.3 billion are affected by some blindness and visual impairment, 466 million with deafness and hearing loss and 75 million need wheelchair daily.
It is essential to bring women-centric disability statistics to purview since they are most vulnerable in poor and middle-income countries, disproportionately suffering from disabilities. Approximately 300 million women around the world have mental and physical disabilities; further adding to a total of 10% of the world female population. Imagine all the unheard voices demanding an accessible world where their sexual and reproductive rights and menstrual health management is not abused blatantly.
Some most commonly prevailing physical disorders like spinal cord injury, cerebral palsy, muscular dystrophy, amputation, arthritis and sensory impairment like blindness might be a mere heavy name of some medical issue for you, but for a physically challenged menstruating woman, it brings multiple unwanted problems affecting various stakeholders. Societal stigma laden with lack of value-added knowledge catering to specific needs of menstrual health management for a disabled becomes the first and foremost obstacle.
The literacy rate for the disabled women in India as per Census 2011 is only 44.6%. This pushes them to be the biggest victims of double marginalisation, both in the household and private sector. Often, they are devoid of financial security which further widens the rift of inaccessible medical care and monthly period care kit. They are deprived of their basic sexual and reproductive health rights. They are often late to receive urgent medical intervention to their unique menstrual problems which create more health risk like PCOD or PCOS.
Women and girls with disability dropout from school early which poses another threat of not gathering adequate information related to menstrual health management. It’s very difficult to find resources written in Braille or sign language explaining these bodily changes and safe practices. The gap of digital divide also pushes visually impaired women to the outer periphery. Blind menstruators and those who don’t feel sensation below their waist find it a very challenging job to distinguish when their pads/period panties need to be changed, causing urinary infections.
There is a huge dearth of period friendly products in the feminine hygiene industry for the physically challenged. In many cases, disabled women have higher chances of experiencing heavy and abnormal periods; thus, changing pads and taking multiple trips to the bathroom with the help of a caretaker is a very cumbersome experience. But, due to limited mobility owing to muscular strength in cerebral palsy, paralysis; menstruating women have also complained regarding finding tampons and menstrual cups too difficult to insert and remove.
In the article, Period in Wheelchairs, Melissa Blake light-heartedly mentions that despite all the logistical challenges and painful cramps, this monthly uninvited visitor makes her feel that her body is normal.
Disabled women after attaining puberty are under constant parental surveillance. The virgin cleansing myth is a major perpetrator of rape crime on disabled women’s body reporting high cases in Africa. Due to limited knowledge, STDs often go undiagnosed.
The inaccessible WASH infrastructure in public and private places fails to be disabled-friendly period inclusive. Disabled women residing in villages in Nepal and other parts of the world have to undertake an arduous journey to reach water bodies-ponds to wash themselves. Affordability to a private toilet with clean water and soap in a nearby safe distance is a rare dream for many disabled women.
Many medical reports quote that “behavioural issues related to menstrual pain are also frequently reported, but may be difficult to ascertain if the girl is nonverbal or has limited understanding”. Their mental health and quality of life are in shambles. Prone to living isolators lives, they seek a strong network of support system or a peer of their age group to discuss the transitory experience.
The horrendous COVID-19 outbreak has posed multiple health challenges for people with disabilities. Menstruating women who need more urgent medical attention than their nondisabled counterparts are unable to get so. Visiting hospitals, getting prescribed dosage of medicines and consulting caretakers have been extremely difficult for them. This has aided multiple acute health problems.
Since the world-wide shutdown, they have not been able to visit the community centres for their pastime, thus, forming the “sensitive population with high risk” of mental health problems as these unprecedented times bring fear and distress.
It is essential to identify and eliminate the potential barriers faced by specially-abled menstruating populations and make health care coverage highly inclusive and customised. Training healthcare workers to understand the nitty-gritty of physical disability will help them connect with the patient and ease their struggles.
Empowering the people with special needs with informed consent and choice by giving them proper knowledge, awareness and practical understanding of SRHR, MHM should be a priority. Data collection and research to monitor and evaluate the health insurance coverage improvements and made by differently-abled people should be initiated.
Hormonal treatment and menstrual suppression/manipulation are some of the methods suggested by doctors and caretakers for disabled adolescents to induce complete amenorrhea or manage abnormal periods, but the long term effects of it are still unclear.
Many applaudable innovations like the “Keela Cup” which is a menstrual cup with adjustable pull string and easy-grip is making the menstruating experience better for many women.
“Kahani Har Mahine Ki” is a life-sized demonstrated menstrual kit specially designed for visually impaired women by Vikalp Design and Pearl Academy of Fashion.
Lastly, Disability and Menstruation shouldn’t limit anyone from living a dignified life. Their special needs, safety, health, personal choices shouldn’t be relegated to stigma, violence, misinformation and marginalisation by a close-knit society. We have to build a society where menstruating with a disability is not inherently wrong. Disability-inclusive MHM is a highly necessitated future.
The author is a part of the current batch of #PeriodParGyan Writer’s Training Program.