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The Challenges Of Dealing With Menstruation For Persons With Intellectual Disabilities

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This post is a part of Periodपाठ, a campaign by Youth Ki Awaaz in collaboration with WSSCC to highlight the need for better menstrual hygiene management in India. Click here to find out more.

Intellectual Disability is a neuro-developmental disorder involving malfunctioning of general mental abilities that affect the functioning of mainly two domains: intellectual functioning comprising of learning, problem-solving and judgment and adaptive functioning which includes daily life functioning such as general communication skills and living independently (American Psychiatric Association, 2017).

The very onset of menstruation, hygiene and management is perceived to be a stressor by neurodivergents and to their caretakers as well (Nurkhairulnisa, A.I., Chew, K.T., 2018). Most of the women have to undergo a roller coaster ride of physical as well as psychological turmoil involving anxiety, depression, risky behaviours and other psychological issues from menarche through menopause. But, when it comes to women with intellectual disabilities, they are subjected to greater challenges.

Although the phenomenon of menstruation is a cyclical process, it occurs monthly. Still, it requires repetitive and intensive attention and care by the caretakers, mostly the mothers having taken up this job.

The Challenges Of Dealing With Menstruation For Persons With Intellectual Disabilities:

When it comes to specific co-morbidities such as; epilepsy, thyroid disorder, polycystic ovarian syndrome, cerebral palsy which expand the sphere of vulnerabilities and thus, pose significant challenges with menstrual hygiene and management. In many cases, doctors resort to performing corrective surgeries which lead to menstrual termination, which has its ethical implications.

Three women sitting on hospital beds
For representation only

In a dreadful situation in 1994, eleven hysterectomies were conducted on women with intellectual disabilities in the age bracket of 13-35 years. The women were from a Pune based residential institution. Upon further investigation, it was revealed that these cases were selected by the Director of the Department of Women, Child and Handicapped Welfare (Sexuality and Disability in Indian Context by TARSHI, 2018).

India and many other South-Asian and Southeast-Asian nations are lagging when it comes to the reproductive rights of women with disabilities. Although, the Indian Parliament had passed a law, Rights Of persons with Disabilities Act, 2016, but it hasn’t empathized with the menstrual rights of women with disability (Thapa, P & Muthuswami, M., 2017).

Abha Khetrpal, a disability rights activist and President of an NGO named, Cross the hurdles, has further expressed her thoughts over this concern. As per her standing on the issue, there is a mention of the rights of women and children with disabilities, but there is no clarity when it comes to how they are treated in special institutions. The provisions written in this legal document are wide, and there is a dire need of having a public dialogue and advocacy, particularly self-advocacy programs to explore the scope of meaning and interpretation, majorly in the context of sexuality, sexual and reproductive rights, how to make these implementations on the field.

Woman with a poster saying we bleed! get over it!
For representation only

A report titled, ‘Treated Worse than Animals’ by Human Rights Watch further argues that the Mental Health Bill and Rights of Persons Bill do not guarantee the rights and welfare of women with psychosocial and intellectual disabilities. Instead, they are encouraging institution-based care, somewhat shifting to a community-based model of services and support mandated by the disability rights treaty (UN Convention on Rights Of Persons With Disabilities). The government should guarantee that the bills safeguard the rights of women and girls with psychosocial and intellectual disabilities and aid adequate and accessible voluntary community-based services (Sexuality and Disability in Indian Context by TARSHI, 2018).

Mothers As Primary Caretakers:

According to a study by Jackie Rogers (2005), around 29% of women with intellectual disabilities had not been given the opportunity for self menstrual management and care. Their primary caretakers were their mothers. Many other studies have pointed towards this sad reality along with the stress that comes with footing the bill of pads and nappies (Journal Of Intellectual and Developmental disability, 2005). The training of skills for menstrual hygiene and management ranges from complete dependence to complete independence depending on the level of their cognitive functioning. In cases of absolute dependence, women could manage to learn basic tasks like, how to stick pad, how and when to change soiled pads.

On the other end, they were not able to adapt to menstruation, thereby falling back on their mothers for management and care. Some of the mothers had taken the tough pill of operating their daughters for menstrual cessation (Thapa, P & Muthuswami, M.,2017). The businesses which are involved in the manufacturing of sanitary pads have a selective approach when it comes to catering menstrual needs of women. They are primarily designed for the able population, thereby ignoring the menstrual needs of women with intellectual disabilities.

Remedial Measures:

On the government level, there is a dire need for lending a helping hand to the families of women with special needs for bearing the expenses of menstrual products. Educational programs, initiatives for inculcating awareness through seminars, webinars, lectures not only catering to elitists but also encompassing rural population which is already living in whims and fancies of various taboos and stigmas.

Medical practitioners should critically reflect on their existing attitudes towards menstrual care, hygiene and management of women with such disabilities. The doctors can play a pivotal role in demystifying the initial confusion, trauma, anxieties of the mothers when their disabled daughters reach their menarche.

Mothers of disabled women can create a feeling of sisterhood in the form of support groups by psycho-educating each other and listening to the struggles individually and collectively, thereby creating a safe and nurturing space for ventilating their frustration.

References:
-Nurkhairulnisa AI, Chew KT, Zainudin AA, et al. (2018). Management of Menstrual Disorder in Adolescent Girls with Intellectual Disabilities: A Blessing or a Curse?. Obstet Gynecol Int. 2018.
-Jackie Rodgers & Jo Lipscombe (2005).The nature and extent of help given to women with intellectual disabilities to manage menstruation. Journal of Intellectual & Developmental Disability, 30:1, 45-52.
-Thappa, P & Sivakami, M (2017). Lost in transition: menstrual experiences of intellectually disabled school-going adolescents in Delhi, India. Waterlines: Practical Action Publishing.

The author is a part of the current batch of the #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.

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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.

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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.

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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.

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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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