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93% Of Women And Girls With Disabilities Are Denied Reproductive Rights. Have We No Shame?

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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.

As we try to step out of tabooed spaces around menstruation and replace them with safer ones to discuss menstrual hygiene management, they are still scarce for women with intellectual disabilities. Building an understanding of changes during puberty in India is not taken seriously enough by families and educational institutions for which there is enough anecdotal and statistical evidence. So when it comes to intersections of disability with menstruation, a much bigger blanket of silence is found around the topic.

The discussion around menstrual hygiene management and reproductive rights in India has largely been limited to the able-bodied population of the country. According to the 2011 census, 21 million people in India have a disability of which 9.3 million are women. The data and knowledge of intellectual disabilities and its prevalence in India are very little and often differing.

Some women and girls with disabilities are dependent on their families or parents for hygiene management and toileting. Illustration by Marta Pucci, Photo: Clue

Difficulties

Girls with intellectual disabilities mostly go through the period of puberty at the same time as those without disabilities. The understanding of the bodily changes however differs. This means that they might take more time to understand what is happening to their bodies and conduct menstrual hygiene tasks such as putting on a menstrual hygiene product. They can also face issues with interpersonal communication and hence may lack the correct vocabulary to be able to communicate discomfort or ask questions during menstruation. 

Some women and girls with disabilities are dependent on their families or parents for hygiene management and toileting. They might also have a lack of understanding of personal boundaries, non-verbal cues, or be able to verbalize their needs effectively. These factors can make menstruation a negative experience for them. Experts say that women with intellectual disabilities who learn toilet hygiene can also learn independent management of menses. 

The reactions to any issues faced by them during menstruation can determine their experiences and future reactions to bleeding. Staining, pads put in an improper way, or disclosing any information in public or inappropriate times are some of the situations that may occur and require proper reactions by helpers or carers. The assessment of these situations can also help the carers understand what kind of help the person might require. Changes in behaviour can also take place due to premenstrual syndrome or other reasons. Charting of behaviour often helps parents and families to understand the reason behind the changes. 

The Silence, Myths And Stigma Around Menstruation And Disability

For most menstruators, advertisements, books, and peer communication help in understanding menstruation and its various aspects. Girls with intellectual disabilities however might find it difficult to access peer support as they are often faced with stigma. Resources like books, advertisements, or the internet might be inaccessible or not adequately developed for their needs. Thus they require external help in understanding menstruation. There is a lack of education about sexuality for them. For this, society’s stigma and treatment are to blame. 

Conversations on reproductive health and sexuality are often considered inappropriate for people with disabilities. Society has a presumed belief of non-competence relating to sex, reproductive health, and sexuality for women with intellectual disabilities. There are also fears and myths about talking about these topics with children with developmental disorders. They are either considered asexual or hypersexual. The parents, guardians, and teachers hence seek to ‘curb’ their behaviours without seeking to answer their questions or talking to them about topics like menstruation. 

Parents also carry a preconceived notion of menstruation being a burden for their children with intellectual disabilities. They think that their child might not be able to ‘handle’ it or they will have to intervene. These beliefs push them to completely remove the topic, deeming it unnecessary. Menstruation therefore is treated as a disability-related disorder by the parents or family. These beliefs cost girls distress during menarche or around their periods.

Pre-menstrual syndrome might affect them more. Girls on the autism spectrum can have amplification of autism-related challenges while menstruating including regulating their emotions or behaviour which can have a negative impact on their lives. 

Menstruation is an intricate part of an individual’s self. Hence it is closely interlinked with self-image. However when society attaches a stigma to disability and creates one concrete ‘normal’, a person’s self-image is formed by seeing others’ idea of ‘normal’. What would this mean for a disabled person?

‘Managing’ Menstruation

Access to reproductive health and reproductive autonomy for people with intellectual disabilities is a Human Right. Despite laws about the same in India, 93% of women and girls with disabilities have been and are still denied them. 

A very common misconception in India around disabilities is that it is inherited. There are several factors that can cause intellectual disabilities. This misbelief however has caused women with intellectual disabilities years of injustice. There have been several accounts of forced hysterectomies done on women with intellectual and other disabilities. A hysterectomy is the surgical removal of the reproductive organs of girls. This has been an outcome of the social attitudes of people around menstruation of disabled girls and women. It is considered a ‘problem’. The absence of institutional support and awareness is one of the major reasons why this is a widespread occurrence in India. The removal of the womb is considered ‘handling of the problem’. 

Another prominent reason for the same has been the fear of parents and family about the risk of pregnancy and sexually transmitted diseases. The reason for this too is an unfortunate truth. Women with disabilities are four times more vulnerable to sexual assault and rape. The families, therefore, feel that removing the uterus will not only ‘manage’ menstruation but also prevent pregnancy. It is shocking to see so much thought goes into removing the ‘shame’ that would be caused to the family but not to the brutality of acceptance of these crimes against women with intellectual disabilities. 

Families and parents who do not go forward with sterilization are often verbally or physically abusive to menstruators with intellectual disabilities. Shobha Vishwakarma, 45, has a 16-year-old daughter with an intellectual disability who admits to being physically abusive.

 “I never spoke to my daughter about menstruation before the onset of her menarche. She just wouldn’t agree to wear a sanitary napkin and would soil her clothes every time she got her period. It was embarrassing. We have men at home; there are boys in her school. It would break my heart, but I would have to yell at her, beat her up – I didn’t know better.”

A woman on a wheelchair thinking about sanitary napkins

What Needs To Be Done?

The reproductive health rights of women although in place need to be taught and affirmed. Forced hysterectomy is still being carried out on women with intellectual disabilities even though Indian law requires the consent of the individual or the guardians. 

Carers at institutions or at home are often offensive or abusive towards girls who are menstruating, ignoring their questions on grooming or menstrual hygiene. This harassment has been normalized in society. Sexuality and reproductive education are extremely important for any child approaching puberty and children with disabilities must be no exception. This education must include not only the ‘What’s but also the ‘How’s so that girls with intellectual disabilities have a clearer picture of the menstrual hygiene management. 

The separation of neurotypical children from children with developmental disorders not only teaches neurotypical individuals that people with disabilities are the ‘other’ but also stigmatizes disabilities. It must not just be the role of the disabled community to ask for inclusive spaces. 

Educational institutions need to educate young girls with intellectual disabilities about menstruation and not brush it under the carpet. The normalization of only one way of learning needs to be questioned. Children with intellectual disabilities often learn differently which does not mean they cannot learn. Storytelling, visual and audio stimulations can help them understand topics better and also create an inclusive environment for them. 

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  1. shweta debnath

    When I chose this article, I just wanted to gain some knowledge around this topic, but after going through the whole thing, it opened my eyes gave a whole new perspective. As an Indian girl I know the taboo behind menstruation and in some way I’ve faced it but I thought that it is normal, but no, its not. that’s what I took from this article. Of course it was an eye opener, I never thought about the problems a specially abled girl faces and it pains my heart that this issue was never raised before. And what I learnt from this is, we have to normalize the topic of menstruation. This is something which happens to every girl and people should empathize rather than criticize and give their unsolicited opinions.

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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.

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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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