In summary, results showed that: the barriers to MHM differ depending on the person’s impairment, disposable menstrual pads are preferable, but disposal practices and services are inadequate, pre and menstrual symptoms are not well understood or managed; menstrual restrictions add additional layers of challenges for people with disabilities and carers, and that there is a lack of menstrual hygiene information, training and support. Access to products, who if anyone supports them.
2.1 The barriers to MHM differ depending on the person’s impairment
People’s experience of managing menstruation was influenced by their impairment. For instance, people with mobility impairments identified challenges related to their use of the menstrual product. Some reported that the type and positioning of the product made it uncomfortable to sit in a wheelchair all day. Many other participants with mobility impairments were concerned that the product was not absorbent 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 multiple impairments).
Inaccessible WASH facilities affected people with mobility impairments most severely. 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 the menstrual cloth in the 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 a problem during menstruation when there is no water” (person with a mobility impairment).
“For those with spinal cord injury, it is easier and necessary for them to use this kind of [raised] toilet. During their period they can’t stand to change their pads so these kinds of toilet become more essential” (person with a mobility impairment).
All of the people with disabilities 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 impairments), five images related to inaccessible WASH facilities. Tulasa, who has a self-care impairment, took four photos and one related to a lack of safe and private WASH facilities (see Supporting document 1).
Carers reported that some participants with intellectual impairments, 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, but found this frustrating.
People with visual impairments highlighted difficulties seeing blood on clothes and bed sheets, and disposing of the product discretely. This was stressful and worrying because of the prevailing menstrual taboos:
“While washing the pants we know which parts to wash properly, but with the bed sheets, I cannot see the stains so it is difficult for me to clean the stains properly [….] For throwing the pads in the dustbin, sometimes the dustbin may be outside the toilet, so I might have to throw it outside of the toilet. At those times I feel worried that a male person from my family would see them (person with a visual impairment).
Participants with self-care impairments, who relied on carers, felt humiliated when asking another person to change their menstrual product, and guilt seeing their carer handle their 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 wouldn’t suffer so much. I wouldn’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 impairments).
“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 impairments).
In contrast, people with hearing impairments interviewed said they did not face any specific challenges explicitly related to their disability.
2.2 Disposable menstrual pads are preferable, but disposal practices and services are inadequate
All participants had access to menstrual materials, including commercial pads, menstrual cloth or tailor made pads, and results from the menstrual product market survey show that preference is highly individualised. Results of the market survey, product attribute assessment and user preference, show that disposable commercial pads with wings were preferred, and cloth was the least preferred. Table 3 captures the results across 16 people with a disability.
Table 3.Market survey: most and least preferred menstrual product
|
Menstrual product
|
Preference
|
Most preferred
|
Least preferred
|
Disposable commercial pad with wings
|
8
|
0
|
Disposable commercial pad without wings
|
2
|
3
|
Cloth
|
3
|
5
|
Reusable tailor-made pad with wings
|
3
|
4
|
Reusable tailor-made pad without wings
|
0
|
0
|
Nappy
|
0
|
1
|
Total
|
16
|
13
|
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. These behaviours did not correlate to impairment type; instead, reasons include a lack of waste disposal options and little knowledge about the consequences.
There were no clear preferences for product type impairments, because of the small number of participants in each category (results are captured in Supporting document 2). Through PhotoVoice, Sharmila (who has a mobility impairment) 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 (Supporting document 1).
2.3 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 a mobility impairment).
Carers reported changes in behaviour before and during menstruation for participants with intellectual impairments 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 of people with intellectual impairments felt frustrated and overwhelmed, as demonstrated by these quotes.
“When she gets her period, if I ask her if she wants to put [a menstrual] cloth [on], she would just go to her room” (carer of a person with an intellectual impairment).
“She doesn’t understand, she won’t listen. [….] For someone like my daughter who does understand but wouldn’t remember, we can’t do much” (carer of a person with an intellectual impairment).
“I feel annoyed. She doesn’t listen to me” (carer of a person with an intellectual impairment).
R: “Have you ever spoken to any medical people about her menstruation?”
C: “What could we do! We can’t stop it.”
2.4 Menstrual restrictions add additional layers of challenges for people with disabilities and carers
Most participants 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 a hearing impairment).
Tulasa took two photos representing the menstrual restrictions, including an image 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.
“I had to be banished in the cowshed for seven to 12 days” (person with a hearing impairment).
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 say that my disability is a curse, so if I don’t obey I will be further cursed” (person with a mobility impairment).
People with visual impairments 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 the 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 a visual impairment).
Two of four photos taken by Bishnu (a carer of a person with an intellectual impairment) 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 an intellectual impairment reported being worried that their family would be cursed if restrictions were not followed. Additionally, carers of people with an intellectual impairment 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 multiple impairments).
“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 an intellectual impairment).
2.5 Lack of menstrual hygiene information, training and support
Some carers were surprised when their charges reached menarche, and one carer did not believe it when the person with a disability said they were bleeding until they saw the menstrual blood. Furthermore, information on menstrual hygiene was commonly withheld from people with intellectual impairments, though one carer did persist and explained that her charge “took one year to understand the process and experience” (carer of a person with multiple impairments). One carer reported that a teacher sent her daughter home from school at the onset of menarche, and her carer never sent her back.
“That day, [her] teacher showed up at the house and suggested not to send [her] to the school because [she] had her mensuration 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 menstruation so it would be better that she stays at home and we take care of her. Then I stopped sending her to the school” (carer of a person with multiple impairments).
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.
“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 menstruation management” (carer of a person with multiple impairments).
Two carers of people with a self-care impairment 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 multiple impairments).