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“We Have To Build A Society Where Menstruating With Disability Is Not Inherently Wrong”

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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.  

% OF POPULATION WITH DISABILITIES IN INDIA
There are more than 2,68,15,000 people with disability in India. Source: Census 2011

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. 

Challenges

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. 

people with disability
Covid-19 has affected people with disabilities the most.

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.

Solution and Hope

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

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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