Menstrual Experiences of Totally Blind Menstruators in Kathmandu

Many communities still consider menstruation as a taboo, and thus various restrictions are imposed on menstruators during their menstruation. Despite their challenges, the totally blind menstruators, too, are not spared from the restrictions. This paper presents the findings of a study on menstrual experiences of five totally blind menstruators in Kathmandu, Nepal. Managing their menstruation independently amidst the social and cultural restrictions is far more difficult for blind menstruators because of their needs in terms of support from the family members and physical infrastructures like bathrooms and toilets. The restrictive practice of keeping them in isolation away from their families, whom they rely upon for their day-to-day activities, for up to 22 days during their menarche (first period) not only snatches away their comforts and convenience but also makes them insecure and causes emotional trauma. Ensuring safe and dignified menstruation for blind menstruators needs wider awareness on the realities of menstruation in society, understanding and supportive role of the family, particularly the non-menstruating members, and the appropriate physical infrastructures.


Introduction
Menstruation is a natural phenomenon in menstruators that marks the onset of adulthood in their lives. Menstruators need to ensure that they remain healthy during this duration and do not contract any infections. Nevertheless, perceptions and beliefs related to menstruation vary from society to society. Different menstruators have different menstrual experiences. Different factors impact such experiences, such as low-vision and blindness, which are very significant ones. The people who cannot see are called "blind"; those who can see a little are referred to as low-visioned" in everyday language. This article uses the term exactly as it is understood in everyday language. Although there are different factors, causes and levels of blindness, ophthalmologically speaking, the terms "low-visioned" and "blind" used in this article indicate people who have lost their complete vision or have some vision loss that cannot be improved even with the help of corrective lenses.
Proper menstrual hygiene management depends on a menstruator having adequate and appropriate knowledge, appropriate hygienic supplies and environment. However, studies show that a great number of menstruators do not have adequate knowledge about menstrual hygiene (Arumugam et al., 2014;Chandra-Mouli & Patel, 2017; Hacettepe University Institute of Population Studies, 2014) and perform genital and general hygiene practices incorrectly (Daşıkan et al., 2015;Pokhrel et al., 2014). In addition, inadequate knowledge and supplies required for menstrual hygiene management (MHM), obstacles, and incorrect hygiene practices result in menstruators experiencing health problems (Abd-El Sattar Ali & Abd-El Aal, 2015;Koyun et al., 2013;Ravisankar & Kanmani, 2014).
As per the population census 2011, about 0.36% or 94,765 people in Nepal are either low-visioned or totally blind (Central Bureau of Statistics, 2011). The data available across sources is not very consistent. The recent estimate is that about 0.3% of the total population, or about 87,000 people in the country, are low-visioned or blind (Awale, 2019). As per available data, more menstruators are affected by this disease for multiple reasons. About two thirds (67%) of the people who are blind are women. Women's access to eye care services is poor (Upadhyaya, 2010). Blindness is a challenging issue in the country. Poverty, illiteracy, and ignorance are the major reasons behind this issue. Menstruators suffer more than non-menstruators as the treatment is found to be gender-biased, too (Upadhyaya, 2010). Many social values and practices are still considered discriminatory against women, which is especially true for low-visioned or blind women. The treatment of menstruators during their menstruation is one such practice that has adverse impacts on their health, social status and dignity.
Menstruation is the time when blood flows from the vagina of menstruators at approximate intervals of 4 weeks (28 days). UNICEF (2019a) defines it as "the natural bodily process of releasing blood and associated matter from the uterus through the vagina as part of the menstrual cycle" (p. 7). Menstruation is also known as "period" or "menses". Releasing the blood and associated matter, generally known as 'bleeding', usually lasts 4-5 days. The start of menstruation is called menarche. The time of menarche may be different for each girl. It ranges from 12 to 15 years on average (Sunuwar et al., 2010), whereas the end of a menstrual cycle is called menopause, and it generally occurs around 45 -50 years of age (Ghimire et al., 2015). The age of both menarche and menopause varies in different geographic locations and countries. In some cases, menarche starts at eight years only (Kriti, 2019).
Nevertheless, menstruation is still understood, perceived and interpreted differently in different countries. Many societies consider it a taboo or stigma. Menstruation is taken similarly in many parts of Nepal, too. Especially in Hindu culture, menstruators are considered 'impure' and 'untouchable' during their menstruation. They are kept in isolation during this time, not allowing them to touch other members of society. They are restricted from going to kitchens, places of worship, and sharing bathrooms or public water taps. This isolation, known as the "Chhaupadi" tradition in some remote areas in the Far and Mid-western parts of the country, is so harsh that the menstruators are kept in the livestock shed or makeshift huts during their menstruation (Amatya et al., 2018). Though a law criminalising the practice of "Chhaupadi" was enforced in 2018, its implementation is weak, and the practice is still ongoing in some remote areas. Cases of rapes and deaths of the menstruators due to snake bites, wildlife attacks, infection and suffocation in the makeshift huts still surface sometimes (BBC News, 2019; Singh 2019).
There are still negative assumptions about differently-abled menstruators, including those who are low-visioned and blind in some sections of society. Nepali society is largely traditional and patriarchal; women face significant discrimination. They are deprived of equal opportunities for education, training, employment and other aspects in different walks of life. The people's attitudes are harsher towards the differentlyabled women than the men. This inflicts double discrimination on womenone because of their gender and the other because of their disabled state (Dhungana, 2006). Gender-based discrimination is common to all women, and half of the population is subject to it, while the discrimination based on disability is targeted at the differently-abled women whose number is comparatively quite small and scattered. The discrimination on the grounds of disability is mostly individualised depending on the type of disability and the place she lives. Rather than a group, it targets an individual, undermines her potential and humiliates her.
There are ongoing efforts to change preconceived notions and attitudes towards differently-abled people, including women. The government has made legal provisions, policies and programmes to set a reservation for disabled people in the public services and provide allowances and other facilities. However, women's agency and voice regarding the utilisation of such provisions has been low (Dhakal, 2021). More so, poor knowledge of menstrual hygiene management (MHM) is a major issue that still remains inadequately addressed. MHM facilities are poor at households, schools and other public places, especially in rural areas (UNICEF, 2019b). The lowvisioned and blind menstruators suffer the most from this. Against this backdrop, many organisations have launched programmes promoting awareness and facilities for MHM.

Methodology
This study is a qualitative inquiry and uses a case study methodology. It provides insights into the menstrual experiences of totally blind menstruators. In the process of this study, the stories, experiences and perspectives of five totally blind menstruators were heard, and data were collected. As a part of scientific methodology, the case study is a robust measure to reflect on human experiences, identify the issues and advocate for the appropriate measures to address the issues (Stake, 2005).
This study was carried out in 2019. Data was collected by interviewing five consenting blind menstruators in Kathmandu. The purpose of the study was shared with all the consenting participants. Participants were first informed about the purpose of the study and how I planned to use the data received from them. Only participants who agreed to participate were then interviewed. The consent of participants for the interview was obtained beforehand. Privacy of all the participants was ensured by replacing the names of participants with numerical codes, avoiding collecting sensitive, personal information and deleting the data when it is no longer required. All participants were interviewed individually in person. An empathetic approach to the interview was used for the study. The approach takes a positive stance on the interviewees and invites them to honestly reveal their stories and feelings (Fontana & Frey, 2005). The author conducted the interviews to use the study findings for advocacy regarding better social policies and attitudes in favour of the low-visioned and blind menstruators.
The main purpose of this study was to explore the menstrual experiences of blind menstruators in Kathmandu. The study particularly looked at their existing menstrual practices, the norms and restrictions put on them by the family and society during their menstruation, and the impacts of these conventions on them. The findings of this study are based on the perception and experiences of the participants. The participants have been quoted where relevant to bring in their perspective in their own words. However, respecting their privacy, their identity is not revealed, and the five participants are coded as P1, P2, P3, P4 and P5.
The participants of this study were girls and women between 18 -35 years of age. All of them were blind from birth. All were unmarried, and all were from Hindu families that belong traditionally to the priest/teacher community (Brahmin). Economically, all of them came from lower middle class to middle-class families.

Findings
In the following subsections and paragraphs, I describe the key evidence and insights drawn from the study.

Cultural Beliefs and Restrictions During Menstruation
There were various restrictions that were imposed on the menstruators during their menstruation. The severity and rigidity of the cultural beliefs and restrictions varied from case to case. Four of the participants said that they were kept in isolation in separate rooms with no sunlight during their menstruation. The isolation period ranged from 11 to 22 days depending upon family custom. Two participants said that they were kept in isolation for 22 days, two for 11 days. One said she did not follow such restrictions at all. They were restricted from having milk and milk products and spicy foods and were not allowed to touch plants either. Four of the participants said they were not allowed to enter into the religious or 'puja' room or kitchen. They were rebuked by their grandparents when they unknowingly touched religious items or entered the puja room or kitchen. The cultural belief creates fear among the girls and the women and compels them to follow the restrictions. The following experiences of the participants illustrate this.
I had my first menstruation at the age of 12 years. I was at home at that time. My mother guided me and told me the norms of the family I had to follow during my menstruation. I was kept in a different room for 22 days during my first menstruation; my elder sister also followed the same norm. The mothers in the rural areas are afraid that their family name will be defamed if their daughters don't follow the practice. [P4] I love my mother and don't want her to be cursed in front of others. I follow the practices she asks me to, just not to dishearten her. Also, I am afraid that if any untoward incident happens in my family, then either my mother or I will be blamed for not following the menstruation norms set by society. [P5] The blind women were found to be more vulnerable to cultural beliefs. They could not argue much with elders because of their dependency on them to get their day-today work done. Moreover, they had a strong emotional attachment with their mothers, and they did not want to hurt their mothers' feelings. The participants who had their period in rural areas and in multi-generational families said they faced more restrictions; there were many dos and don'ts. One of the participants said:

Psychological Impacts of Menstruation
The psychological impacts of menstruation, especially menarche, on the blind menstruators were found to be mostly negative and adverse in the rural areas, while somewhat mixed in the urban areas. Three participants who were living in rural areas and multi-generational families at the time of their menarche said the phenomenon had hurt their attachment to their parents and other relatives, weakened their sense of selfesteem and dignity, lowered their confidence and increased feelings of fear and anxiety. Not getting to touch the persons whom they loved, respected, and trusted the most for a long time was a frustrating experience. A participant shared her experiences: The participants said they could not feel the difference in fluid flowing from their vagina at their menarche. They were completely dependent on other women members in the family to know that the fluid was blood and they had started menstruating. Even afterwards, while working or at college, they had to depend on others to know if there were any blood stains or leakage on their clothes. They thought that this type of nervousness might be less in sighted menstruators. The participants felt it was unjust when they were not allowed to celebrate festivals during their menstruation. Moreover, not getting to meet their siblings for several days during their menarche (first period) made some of them cry and feel harassed.

Changes Overtime in Practices Related to Menstruation
The cultural restrictions imposed on women during their menstruation gradually become less strict. All the participants strongly noted this change. They agreed that it was challenging during their mother's time; their mothers used to sleep outside their home and used to go to a nearby river, pond or spring to wash their menstrual rags and clothes. This practice no longer exists. All the participants said that they stay inside their home, in their own rooms, and use the toilets and bathrooms within the household premises. However, the other restrictions like not being allowed to enter the kitchen or religious places, and celebrating festivals and eating some food items still prevail to some extent. Participants reported hearing about lots of hardships of their mothers and grandmother during their menstruation. They were afraid even to imagine the plight of the blind menstruators in such situations. They said the change was more profound in urban areas than in rural areas.
I feel like there are lots of changes in menstrual practices from the past. When my mother had periods, she used to take a head bath only on the 4th, 5th and 6th day irrespective of the season. But now I take a bath any day I want. There is not any such norm. Previously the menstruator herself was to wash her bed sheet and other clothes. Now anyone can do it for her. I am not compelled to carry out traditional norms. However, there are still certain beliefs like not entering the kitchen and religious places. I follow these norms just due to respect for my mother, but I am quite sure that this too will end soon. [P1] Several government and non-governmental organisations are working on the issue of menstruation and effective menstrual hygiene management. All the participants felt that these initiatives supported the positive change, though slow in pace. The mentality of the people concerning menstruation has been positively changing. All the participants were hopeful that the taboos surrounding menstruation would not remain the same in the next generation.
Though at a slow pace, the situations are changing. Practices such as living in isolation and following other restrictions during one's period are gradually becoming less strict. All participants experienced this change and believed the practices would totally disappear by the next generation; they said they would not let their daughters follow any of such practices. Which specific factors may instigate this change is a subject of future research. One participant of this study did not follow such practices and did not feel any discrimination based on menstruation. This is really an interesting case needing further exploration of the factors attributable to the changes.

Gender Perspective
One participant remarked: "I have not heard of any parents explaining their sons about menstruation and teaching them how to use pads!" [P5]. Menstruation is considered solely as a women's issue. All the participants felt that the existing education system, both the formal and the informal, does not impart proper knowledge about menstruation. There is no dearth of content on menstruation in the available literature, but practical implications are not explained. Participants reported that even their teachers feel shy while teaching these chapters, and there are no open discussions.
The few initiatives are targeted at menstruators, non-menstruators are excluded. The participants felt the non-menstruators around them did not know properly about menstruation. Despite knowing there was discrimination against women because of menstruation, the non-menstruators were not concerned enough to raise their voices against this. Most participants said they could not talk openly about their menstruation to their non-menstruating colleagues in colleges and workplaces. The nonmenstruating colleagues, too, were hesitant to come into such a discussion.

Key Elements of Safer and Dignified Menstruation
The practices related to menstruation are socially constructed. The participants rejected outright any biological or scientific basis behind unhygienic, humiliating and restrictive practices imposed on women during their menstruation. They consider the accurate understanding of the subject and positive and supportive role of the society to be the first key element for ensuring safer and dignified menstruation. As per their views, the limited knowledge of the non-menstruating members about the physiology of the menstruator's body makes menstruation complicated and taboo.
All the participants mentioned that blind-accessible physical environments, especially toilets and bathrooms, is another important element of safer and dignified menstruation. They said this infrastructure, even in their homes, is not friendly. They noted that toilets in hostels, schools, colleges, offices, and public places are not hygienic, clean or women-friendly. They said that many of those toilets lacked a proper door, adequate water, or a facility to dispose of used pads. One participant remarked:

Discussion
Menstruation in many communities is considered impure and polluting, and there are various restrictions put on menstruators. Irrespective of whether they can see or not, they are culturally obliged to follow the restrictions. The restrictions as seen in this study also prevail in other parts of the world. A study in Papua New Guinea, Solomon Islands and Fiji found that women are following restrictive practices such as limited community mobility, abstaining from food preparation and cooking, not touching their husbands, not attending church, and not hygienically washing menstrual hygiene materials during their period. The restrictions stemmed mainly from the belief that the menstrual blood is dirty, bringing bad luck to men and boys (Mohamed et al., 2018)]. The notion of women becoming impure or polluting during their periods is well-rooted in many parts of India too. In some extreme cases, menstruators are not allowed to touch cows during their period due to the belief that the cow will become infertile if touched by a menstruating woman. This implies menstruation as a 'curse' and nurtures inferior feelings in the girls and the women (Garg & Anand, 2016). As revealed in this study, the restrictions related to menstruation were stricter in the rural areas than in the urban areas in many other countries.
Menstrual hygiene management is more difficult for blind menstruators due to their inability to see (Dundar & Ozsoy, 2020). They need more care and assistance during their period to meet their unique needs. They have difficulty using menstrual products like pads and clothes and difficulty safely disposing of them after use. Different factors are contributing to the oppression of disabled persons, and it is difficult to know the pivotal one. Understanding the intersectionality in the lives of blind menstruators is not easy (Sommo & Chaskes, 2013). Menstruation is a sensitive time for them, and due to the hormonal fluxes, they might undergo traumatic experiences. This requires a proper caretaking system and the availability of disabled-friendly infrastructures, especially accessible toilets in public places. Environmental and physical infrastructures to enable blind menstruators to manage their menstruation on their own in safe and dignified ways may be a potential solution.
The participants stated they were hesitant to argue with their parents against the cultural norms prevalent in their society. Despite being blind, they were not spared from the menstrual practice. All the participants in the study were from Hindu Brahmin families, and they followed the rules and regulations imposed on them by their family members. The practices during menstruation have a relationship with the religions (Guterman et al., 2017) and vary from religion to religion. Religion is considered one of the important elements which contribute to the customs and norms of society (Abdulla, 2018). All the participants were educated and knew all about menstruation as a biological phenomenon, but still, four of them followed the cultural restrictions.
Discrimination in any form has lasting psychological impacts on the persons being discriminated against (Wofford et al., 2019). There are many discriminatory restrictions imposed on women in several cultures, such as in Hindus, during their menstruation, and some of these are humiliating and present the women as inferior. This fosters a negative attitude and shame towards menstruation in women (Bernstein, 1977). Because of this, menstruators feel discriminated against by non-menstruating members of their families and community. Studies have shown that women's performance in their day to day tasks is affected by their menstrual cycle (Alkanat et al., 2021). Non-menstruating members of society do not have to suffer the pains of menstruation, and many are apathetic to this issue. Moreover, the rituals and practices surrounding menstruation are directly or indirectly rooted in the cultural and religious teachings from the religious institutions, which are often led by non-menstruators. The priests and religious persons have a good deal of influence in culminating certain societal practices. The other non-menstruating members too have great power and influence in their families and communities. They all can help to bring change in cultural norms and challenges regarding menstruation. Patriarchy and gender inequality are major factors behind the restrictive and discriminatory practices during menstruation. The role of the non-menstruating members in the family and society is, therefore, crucial in addressing the issue (Roberts et al., 2002). This study, too, has established that the participants whose fathers were more concerned and caring about menstrual issues had to follow almost no or comparatively less severe restrictions during their periods. Not much has been discussed about the menstruation experiences of blind menstruators in Nepal so far. The specific perspectives of the blind menstruators, being included in the larger category of women, on the various social issues have not been explored in scientific literature. This study helps policymakers, campaigners, and others better understand the perspective of blind menstruators regarding menstruation and address issues associated with it effectively. The experiences of menstruation in blind people are different from that of others. More studies are needed to look in-depth at this issue. Different organisations from the non-governmental sector are working on education and awareness related to menstruation. However, there is still a lack of practical research on various aspects of menstrual hygiene management in the country (Population Services International Nepal, 2017). Research on menstrual hygiene management is limited in Nepal and needs to be strengthened, though some research papers are in other parts of the world (McGregor & Unsworth, 2021).

Conclusion
Menstruation is a normal biological process, but it is still heavily stigmatised in some communities across the world. Some communities in Nepal consider menstruators impure and polluting during their period and impose various restrictions on them during that time. All these restrictions equally apply to blind menstruators as well; they are not spared because of their disability. The restrictions are stricter during menarche and then gradually relaxed in the subsequent periods afterwards. They are more strictly followed in the rural areas than in the urban areas and multi-generational families with elderly members than in nuclear families.
Though the communities' view towards a sighted menstruator and a blind menstruator is not different, the latter suffer more from the outcomes of the taboo. The absence of differently-abled friendly physical infrastructures such as toilets in their homes, public places, offices, and colleges impacts their menstrual hygiene's safe and dignified management.
Almost all the participants stated that most of the non-menstruators in their families and communities were reluctant to talk about menstruation openly. This stigma hinders enacting proper measures to address harmful impacts resulting from the restrictions during menstruation. There should be an open discussion about menstruation; people must not consider it a taboo or stigma. Changing a deeply rooted cultural practice needs the collaborative efforts of people from all walks of life. It needs change in political, economic, and cultural aspects as well. Safe and dignified menstrual hygiene management is a fundamental right of menstruators. This right can be realised sooner if all the sections of society work together to address the issue.
However, cultural beliefs related to menstruation are changing. The restrictions are less strict in comparison to the previous generations, but the changes are slow and mostly limited to urban areas. The young menstruators do not want to follow the traditional, restrictive practices. Menstruation is not only a menstruator's issue but also a social issue. Creating awareness about the realities of menstruation in wider society and developing blind-friendly physical infrastructures are key interventions that may reduce the cultural taboo surrounding menstruation.

Disclosures
The author declared no potential conflicts of interest with respect to the research, authorship, and publication of this article.