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.
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.”
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.