3.1 The barriers to MHM differ depending on the functional limitation
People with mobility limitations identified challenges related to their use of the menstrual product. For instance, some reported that the type and positioning of the product made it uncomfortable to sit in a wheelchair all day. Many other participants were concerned that the product was not absorbable enough and worried about leakages.
"When I sit in the wheelchair the pads may fold or something like that might happen which makes me feel uneasy […]. It becomes very uncomfortable to sit. Unlike my sisters who keep moving around, I have to sit in a place continuously. I get angry then and gets difficult” (person with mobility and self-care limitation).
Inaccessible WASH facilities affected people who had mobility limitations most severely as they were unable to easily or safely reach the place they change their menstrual product, comfortably change, wash or dry their menstrual product, or wash their bodies in private.
“[I] need to wash menstrual cloth in toilet. There is no water in the toilet…. I have to carry water in a bucket while also managing the crutches […] I can’t wash [the menstrual] cloths either. [……] I keep it under my bed when I can’t wash it, and wash it when I get water. I have problem during menstruation when there is no water” (person with mobility limitation).
“For those with spinal cord injury, it is easier and necessary for them to use this kind of [raised] toilet. During period they can’t stand to change their pads so these kind of toilet become more essential” (person with mobility limitation).
All of the participants with functional limitations who participated in PhotoVoice took images to show how inaccessible WASH facilities presented a major challenge. Of the nine photos taken by Sharmila and Babita (who have mobility and/or self-care limitations), five images related to inaccessible WASH facilities. Tulasa, who has self-care limitations, took four photos and one related to a lack of safe and private WASH facilities (see Supporting document 1).
Some participants with limitations in remembering or concentrating, had difficulties retaining MHM information. Carers repeatedly told them how to change and wash the menstrual cloth every month and every time it needed changing, which carers found frustrating.
People with visual limitations highlighted difficulties seeing blood on clothes and bed sheets, and disposing of the product discretely, which was stressful and worrying because of the prevailing menstrual taboos:
“While washing the pants we know which parts to wash properly, but in the bed sheets since I was not able to see the stains it was difficult for me to clean the stains properly [….] For throwing the pads in the dustbin, sometimes dustbin may be outside the toilet, so I might have to throw them outside of the toilet. At those times I feel worried if some male person from my family would see them (person with visual limitation).
Participants with self-care limitations felt humiliated when asking another person to change their menstrual product, and guilt seeing their carer handle their menstrual blood as they were driven by the shame and disgust related to menstruation and menstrual blood. Consequently, they changed their menstrual product less frequently than they wanted to.
“She says that the blood smells during my periods. [….] She finds it disgusting. […] I feel bad. If I had my own hands, I didn’t have to suffer so much. I didn’t have to depend on someone else. I could do it on my own; it’s not something you show it to others. I feel like crying. I feel bad” (person with self-care limitation).
“Even to change a pad I have to wait until my sister comes in the evening and helps me change, if not, I will have to wear the same pad till tomorrow” (person with self-care limitation).
In contrast, people with hearing limitations interviewed said they did not face any specific challenges explicitly related to their disability. However, these participants all attended a school for children with hearing impairments and said they read about menstruation in books, and were supported by friends and teachers to practically manage menstruation. This finding may not reflect the experiences of people with hearing limitations who do not attend this type of school.
3.2 Disposable menstrual pads are preferable, but disposal practices and services are inadequate
Results from the menstrual product market survey show that preference is highly individualised. Table 3 captures the results of the market survey across all participants and demonstrates that disposable commercial pads with wings were the most preferred, and cloth the least. No data was recorded for five participants.
Table 3
Market survey: most and least preferred menstrual product
Menstrual product
|
Preference
|
Most preferred
|
%
|
Least preferred
|
%
|
Disposable commercial pad with wings
|
8
|
50%
|
0
|
0%
|
Disposable commercial pad without wings
|
2
|
13%
|
3
|
23%
|
Cloth
|
3
|
19%
|
5
|
38%
|
Reusable tailor-made pad with wings
|
3
|
19%
|
4
|
31%
|
Reusable tailor-made pad without wings
|
0
|
0%
|
0
|
0%
|
Nappy
|
0
|
0%
|
1
|
8%
|
Total
|
16
|
100%
|
13
|
100%
|
Though the disposable commercial pads with wings were preferred by participants, hygienic and environmentally friendly disposal behaviours were often inadequate. Many participants threw used disposable commercial pads in rivers or down hillsides, so other people were less like to see the used product. Some wrapped the pads in plastic, so they were less visible. Reasons include a lack of waste disposal options and little knowledge about the consequences.
There were no clear preferences for product type by functional limitation, because of the small number of participants in each category (results are captured in Supporting document 2). Through PhotoVoice, Sharmila (who has a mobility limitation) explained that she prefers using disposable commercial pads as they do not require washing, which she finds particularly challenging as she is unable to carry water and use her crutches (see Supporting document 1).
3.3 Pre and menstrual symptoms are not well understood or managed
Many participants said that menstrual cramps were one of the biggest challenges they face when menstruating. Pain management strategies included home remedies, such as drinking warm water, sleeping and tying a cloth tightly around the abdomen. There is a belief that pain relief tablets can damage your health, so few people took them and few carers provided them.
“If I take medicine I will have more pain during the next period that’s why I don’t take any medicine” (person with mobility limitation).
A lack of pain management may have more negatively impacted people who experience difficulties communicating, or remembering or concentrating as they may not have understood the cause of the discomfort, or been able to communicate if they were in pain. Changes in behaviour reported before and during menstruation for these participants included withdrawal, increased hyperactivity, self-injury, showing their used menstrual product to others, excessive sleeping, being frightened, withdrawn and refusing to eat. Without social support mechanisms to help understand and respond to the changes in behaviour, carers felt frustrated and overwhelmed by these behaviours.
3.4 Menstrual restrictions add additional layers of challenges for people with disabilities and carers
Most participants, especially Brahmins, followed menstrual restrictions, which dictate that menstruating people must sleep separately, are not allowed to worship, enter the kitchen, cook or touch plants, because it is believed that menstrual blood is dirty and contaminating.
“Dirty blood leaves the body during period so we should not worship during that time” (person with hearing limitation).
Of the three participants with functional limitations who completed PhotoVoice, two images focussed on menstrual restrictions. Tulasa took a photo of the hut, outside her home that she sleeps in when she is menstruating. During an in-depth interview, one participant also explained she lived in a cow shed during menstruation when at home, which may make her vulnerable to abuse and violence.
“I had to be banished in the cowshed for seven to 12 days” (person with hearing limitation).
If a person does not adhere to the restrictions, it is believed that the gods will curse the family. Disability was also viewed as a curse. Therefore, people feared that they will be doubly cursed if they did not follow restrictions.
“….I am already suffering like this and people anyway say that my disability is a curse, so if I don’t obey I will be further cursed” (person with mobility limitation).
People with visual limitations reported that menstrual restrictions were a major source of concern, fearing that they might inadvertently touch a ‘restricted object’, and thus lead the gods to curse the family.
“In house, when I move here and there, I may touch things [that are not allowed to]. I also cannot go against my family. It has been followed by our family, it is a tradition. […] I feel odd to move around because I was worried that I might touch them” (person with seeing limitation).
Two of four photos taken by Bishnu (a carer of a young person with limitations remembering/concentrating) during PhotoVoice, focused on menstrual restrictions. She ranked these as the biggest challenges she faces when her daughter menstruates. Similarly, during in-depth interviews, carers of people with limitations in remembering or concentrating reported being worried that their family would be cursed if restrictions were not followed. Additionally, carers of people with remembering limitations explained some people did not wear a menstrual cloth, preferring to soak up the menstrual blood with underwear or trousers. Some participants isolated themselves when they are menstruating and others went out with blood stained clothes. One carer explained:
“She just walks like that with blood on her clothes” (Carer of a person with remembering and concentrating, self-care, communicating limitations).
“She would take it out and show it to others and would tell them to look at it. It was embarrassing” (Carer of a person with remembering or concentrating limitation).
These behaviours angered community members and made carers stressed, angry and exhausted. The result was that verbal and physical abuse was directed at the person with a disability by family members and members of the public.
1.1 Lack of menstrual hygiene information, training and support
Some mothers were surprised when their daughters reached menarche and one mother did not believe her daughter who told her she was bleeding until she saw it. The belief that people with disabilities do not have the same reproductive systems as non-disabled people (18, 20), means they are even less likely to receive it than non-disabled people. Additionally, information on menstrual hygiene was commonly withheld from people with remembering or concentrating limitations, because of the perception that they would not understand it. However, one carer explained that her daughter “took one year to understand the process and experience” (carer of a person with remembering or concentrating, self-care, understanding or communication limitations). This quote demonstrates that people may be able to understand information about the menstrual cycle, if it is tailored to their level of understanding and repeated regularly, though this would be dependent on the type and extent of their functional limitation.
Menstrual hygiene information is mainly delivered at schools, but many participants with remembering or concentrating limitations did not attend school so were excluded from receiving this information. One participant was sent home from school at the onset of menarche, marking the end of her formal education.
“That day, [her] teacher showed up at the house and suggested not to send [her] to the school because [she] had her menstruation in the classroom and the blood leaked on the bench she was sitting on. They said that it is difficult for [her] to take care of herself during the mensuration so it would be better that she stays at home and we take care of her” (carer of a person with remembering or concentrating, self-care, understanding or communication limitations).
Providing menstrual care by carers was viewed as a very private issue: very few carers discussed this subject with other people, including medical professionals. No support or support networks existed for carers, and many carers felt isolated and overwhelmed. Some carers were unable to leave the home because of caring duties. This meant they were unable to access MHM information shared at community meetings and events.
“We don’t know anything else. I don’t go anywhere. I hear that people come to our village to teach about those things, but I haven’t been taught about the menstruation management” (carer of a person with remembering or concentrating, communicating, self-care limitations).
Two carers of people with self-care limitations requested MHM training for the young person in order to increase the young person’s independence. A motivation for carers was fear for the future, as they worried about who would look after their daughter when they are no longer able to.
“For now, I am here, but in future we don’t know what will be the situation. […]. I won’t live long but she has lots of time, I am very worried" (carer of a person with remembering or concentrating, self-care limitations).