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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.

-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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        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.

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