Author: Ruth Gottlieb
On 28th May each year, Menstrual Hygiene Day aims to advocate platforms that promote good menstrual hygiene management globally, and to break the silence that causes taboos and stigma around menstruation. This year’s theme emphasizes how improved menstrual hygiene can improve economic and educational opportunities for people menstruating in low- and middle-income countries. This blog post will however focus specifically on persons with intellectual disabilities (PWID) who menstruate, as they are a large and diverse population who are rarely mentioned in discussions of sexual and reproductive health and rights, including menstrual health and management (MHM).
Two years ago I interned with UNFPA country office in Eritrea and worked with projects related to family planning and gender based violence. Menstruation and disabilities were rarely discussed, hence, you can imagine that MHM among PWID was something never talked about. As my current dissertation partner, Hannah, introduced me to this topic, I was surprised by the contradiction of the large amount of research being conducted in this topic, and yet the persistent lack of awareness. I had never encountered these dilemmas, despite my interest in sexual and reproductive health and rights. With thanks to Hannah and my current supervisors, I was confronted with my ignorance in this topic, and have since then begun to read and learn from the existing knowledge.
Globally, menstrual health continues to be an important, neglected issue among PWID. Menstruating people are viewed in many contexts as dirty and impure. PWID who menstruate are faced with a double burden of stigma, as their disability is also viewed as messy and unwanted. Femininity and the able body are social norms that contribute to the double burden of stigma that PWID who menstruate might experience.
Previous studies show that “menstrual symptoms”, or experiences of menstruation, such as PMS, menorrhagia (heavy periods), and behavioural changes, are as common among PWID as they are for persons without intellectual disabilities. However, communication abilities, ability for abstract thoughts, and understanding about menstrual blood can vary. Coping with blood and menstrual pain can lead to an unpleasant experience of menstruation amongst PWID. There is however a discussion that, for many, unpleasant experiences of menstruation stem from society not talking about bodies, puberty, sex and relationships with PWID. Needless to say, this is applicable to all who menstruate.
Studies have also highlighted caregivers’ and parents’ experiences of MHM among PWID; showing that menstrual suppression has become a common pragmatic strategy. Menstrual suppression is thought to ease the burden of menstruation for the sake of the person menstruating, and also to make care and daily living more manageable for caregivers and parents.
To put this in context, PWID who menstruate have historically been subject to sterilisation and hysterectomies with or without consent. In many high-income countries, hysterectomies are practised as a last resort solution with the consent of a parent or other guardian. Long term contraception, such as hormonal injections, are more commonly used for menstrual suppression.
Menstrual health strategies such as menstrual suppression have been raised as an ethical concern, leading to discussions regarding the ability of persons with moderate and severe intellectual disabilities to give informed consent to treatment.
This post is not intended as a voice for persons with intellectual disabilities, but a short and hopefully informative text about a topic within MHM that receives little attention. It is an introduction to a complex issue affecting a large diverse group. Menstrual hygiene management among persons with intellectual disabilities highlights issues related to autonomy and the rights to make your own decisions, and raises questions about femininity, the normative able-body, and how those factors intersect. The complexity and the apparent lack of knowledge in this topic results in stigma and insecurity about how this topic “should be” discussed. If you are interested to find out more about menstrual health and management among PWID, follow the links below:
Video: Panel discussion about disability and intersectional feminism
Article: The case of Ashley, a child whose parents chose a treatment that prevented her going through puberty in order to facilitate care-giving and preserve her quality of life
Article: Discussion of how to centre people with disabilities in conversations about menstrual hygiene management