1. BACKGROUND:

Nepali society still views disabilities as a punishment of previous life. The National Census 2011 claims 1.94 % of Nepalese live with some kind of disability but human rights activists working on this issue do not agree upon this data because this ratio is very negligible in comparison to developed countries.

The person with disability right act has classified and defined 10 different types of disabilities. They are:

1. Physical disability
2. Visual impairment (Blindness)
3. Hearing impairment (Deafness)
4. Hearing and visual disability (Deaf-blindness)
5. Speech or language impairment
6. Mental and psychosocial disability
7. Intellectual disability
8. Hereditary Hemophilia related disability
9. Autism
10. Multiple disabilities.

Women and girls with disabilities may experience menarche differently and more negatively compared to other women. These include frequent reports of dysmenorrhea (painful periods), menorrhagia (heavy periods), menstrual hygiene issues and mood and behavioral changes, linked to premenstrual syndrome (PMS). Women with menstrual cycles can face barriers to adequate healthcare, and having a disability can add another layer of difficulty. Some people with disabilities face challenges in managing their health.  Women with disabilities are people who menstruate often encounter obstacles in accessing sufficient support and services, which can put them at risk for more health problems.

2. Menstruation challenges of women with disabilities in Nepal

In Nepal, the menstruation difficulties of girls with disabilities are considered unavoidable. In this society where people with disabilities are treated as incapable persons, there is a belief that women with disabilities have to live a more difficult life if they got a period. It is difficult for deaf women to go to buy sanitary pads without having a sign language interpreter as medical and grocery store representatives do not have knowledge of sign language. Similarly, the lack of menstruation awareness material in sign language has added to the challenge. Unlike other subjects, it is not discussed, so they are deprived of the necessary information from their families.

Due to the lack of accessible public toilets in Nepal, wheelchair users, the spinal cord injured and crutches users cannot change the sanitary pads as required from time to time. In the worst case, they have to come crawling on the floor to use unclean toilets. Similarly, due to lack of friendly structure/ facilities in medical, departmental stores and grocery stores, wheelchair/ tricycles, crutches, walking sticks/cane using women with disabilities are not able to buy sanitary pads on their own which leads to dependence on someone.

Due to the lack of an accessible toilet in the school, wheelchair users and women with disabilities who use calipers are absent in school for 4 days during menstruation time.  Due to the hassle of changing sanitary pads, Surangana Bharati, who has a physical disability, says she doesn’t want to take the exam when she’s in menstruation because she cannot change her sanitary pad in school.  She says “While changing sanitary napkins I have to leave the exam in the middle and come to the room. I have no choice besides that.” Because of menstruation, some students with disabilities were compelled to drop out of school.

Lack of proper dustbins in schools and regular water in toilets of schools is a challenge for visually impaired women to wash their hands and throw pads in a well-organized place. Similarly, since the date of the sanitary pad is not written in Braille, there is the risk of using an expired pad.

In Nepalese culture, there is a belief that a girl should not be with their family and should not see them especially males (brother, father, grandfather and cousin, etc.) for the first time in case of menstruation, so they are sent to stay in someone else’s house for about 7 days. As a result of that, visually impaired women find it very difficult to manage their first menstruation on their own because menarche is a new experience for every woman or girl. Visually impaired students studying in the hostel always wish for their first menstruation to happen while in the hostel.

Similarly, girls with cerebral palsy (CP) face major challenges when it comes to period hygiene.  Condition of CP includes poor coordination, stiff muscles, weak muscles and tremors. Such women with disabilities totally depend on another person for day-to-day activities.

Women with deaf-blindness have trouble understanding what goes on in their bodies due to limited communication and information. Def-blind girls/women often throw away their sanitary pads. Some women with def.-blind disabilities even bite their pads when they feel embarrassed. Menstruation is considered a burden by the mothers of women with autism and intellectual disabilities who have to rely entirely on others for their daily activities. Their sanitary pads need to be changed by the mother or other female members of the family, and in their absence by the male family members. As a result, girls/women with intellectual disabilities cannot distinguish between good and bad touch. As a result, society spreads the illusion that some people with disabilities have intense sexual desire.

Sarita Lamichhane

In Nepal, a few parents are also concerned about their daughters’ safety as these girls do not understand what is happening with them and they do not understand when someone tries to rape or molest them. Several times, rape cases are only identified when the girl is found to be pregnant.   One mother of a girl with intellectual disabilities from Lalitpur district said, “It would be better if my daughter dies before I do. I am not sure if she will be taken care of after me.” Sometimes in extreme cases, parents of girls/women with intellectual disability may be considered for medical procedures (stunting growth, hysterectomy, and/or sterilization). These procedures are not recommended by the Person with Disability’s Rights Act 2017 and the United Nations Convention on the Rights of Person with Disabilities (UNCRPD). If a person can’t consent to an optional medical procedure, it’s generally considered a human rights violation. In Nepal, a person with a severe intellectual disability (who has impaired capacity to consent) usually has a parent responsible to make decisions about their health in their best interests.

Chaupadi is practiced by up to 95 percent of families in some parts of western and mid-western Nepal, fuelled by the mistaken belief that menstruating women and girls are “unclean.” They are forbidden from touching or mingling with other people and have to stay outside the family home, usually in a hut or shed of the type in which Tulasi was bitten.  https://www.hrw.org/news/2017/08/10/step-right-direction-menstrual-stigma-nepal In May 2005, the Supreme Court of Nepal banned Chaupadi system and issued a directive to formulate laws to eliminate the practice. Laws have also been formulated but ground realities have not changed. This malpractice has led to poor hygiene directly impacting the health and well-being of adolescent girls and women. For women with disabilities, it is even worse. https://myrepublica.nagariknetwork.com/news/suffering-in-silence/ There are increasing cases of girls and women being subjected to sexual abuse, even death while being in Chhau sheds. But we did not have disaggregated information on it.  We can imagine Chhau sheds are not accessible for different types of women with disabilities.

3. Working experience of Prayatna Nepal in menstruation hygiene:

Even the disability movement in Nepal does not give much priority to menstruation. Nowadays, few organizations have started to take initiation to work on menstruation issues of women with disabilities in Nepal. Prayatna Nepal, a non-government organization ( www.prayatnanepal.org ) has worked on menstruation hygiene management issues in different schools where blind and visually impaired students study. During the programs the organization had found different challenges faced by visually impaired students during menstruation time. Students of one school from Gorkha say,“The sanitary pads we use at our school are not allowed to be thrown in the dustbin. We have to wait for Saturday or school holidays to take the pads to the forest. Even if we use a cloth pad, we can’t dry it outside the hostel on school days. We go to school by keeping pads in the bedroom window for drying.” 

During the menstruation hygiene management workshop of Prayatna Nepal at Pokhara one participant shared, “We are often pressured by our families to remove our uterus so that we stop menstruating.” One of the participants of the menstruation hygiene management workshop in Kathmandu also says, “Since there are no dustbins or other disposal facilities, we are dependent on our relatives to throw away used pads.”

When Prayatna Nepal had distributed menstrual cups at the Menstruation Hygiene Management Workshop, among the 16 visually impaired women participants, 2 unmarried visually impaired women refused to take the menstrual cup for fear of losing their virginity before marriage.

4. Way forward:

1. Ensure access to suitable menstruation hygiene products that are changed regularly and disposed of safely.

2. Menstruation-related awareness material needs to be published in easy to read and accessible format. These could be tactile tools or more audio-visual materials with sign language and caption, pictorial format or shorter sessions.

3. Development partners need to increase investment in the sector of menstruation of women with disabilities.

4.Consider meaningful participation of women with disability in the design, implementation, monitoring and evaluation of interventions.

5. Ensure access to adequate health services and material.

6. The federal government, provincial government, local government, other concerned non-governmental and private sectors and institutions should make public and private taps and toilets, doors, places inside toilets accessible to people with all kinds of disabilities.
7. Ensure the availability of adequate water and other necessary facilities for the menstruation sanitation management of all women and especially women with disabilities in schools and public places.
8. Organizations working in the field of menstruation should give high priority to the menstruation issues of women with disabilities.
9. Lobby for ensuring menstruation issues of women with disabilities in curriculum and textbook of school level.

  Conclusion:

Maintaining menstrual health, hygiene and practices for all these women and their families is challenging. It’s an unending uphill struggle for which people require a lot of mental and physical support. Our society needs many more hands to come together and work in this direction with sensitivity and acceptance. We must first empathize with the ones impacted by this issue to even think about a solution.

sarita@prayatnanepal.org