The 3rd December is international day of persons with disabilities. For this purpose, we release this blog post that summarizes how women and girls with disabilities might face challenges to manage their menstruation and menstrual hygiene, provides short recommendations for your intervention, as well shares examples from MH Day partner organisations. If you have feedback, programme experiences or research to share, please do! We are happy to update the blog.
About disability
Different types of disabilities include, among others, restrictions in mobility, reduced visual and auditory, speech and cognitive capabilities.
More than one billion people, or approximately 15 per cent of the world’s population, live with some form of disability. 80 per cent live in developing countries (UN).
The WHO underlines that disability is thus not just a health problem. According to a position paper by Disabled People International (DPI) disability can be understood as the outcome of the interaction between a person with an impairment and the environmental and attitudinal barriers he or she may face“. It is now recognised that disability is “just as much or more about how society puts up barriers that exclude and disadvantage people with impairments by not recognising their rights, needs and potentials (CBM).”
People with disabilities are placed at higher risk of violence include stigma, discrimination, and ignorance about disability, as well as a lack of social support for those who care for them.
Disability and menstruation
(Image by Clue)
Women and girls with disabilities may experience menarche and menstruation differently—and more negatively—compared to non-disabled women. These include frequent reports of dysmenorrhoea (painful periods), menorrhagia (heavy periods), menstrual hygiene issues and mood and behavioral changes, linked to premenstrual syndrome (PMS). Challenges in terms of managing menstrual hygiene can be:
- Women and girls with disabilities may be less likely to gather information about relevant topics themselves, and /or
- Existing education materials does not include relevant aspects for women and girls with different disabilities or doesn’t cater for different learning requirements
- Women and girls with disabilities may face challenges in accessing sufficient support and especially health services
- WASH infrastructure might not cater for different impairments
- Maintaing hygiene (changing materials, personal hygiene and washing) can be challenging for some people, especially with limited pysical abilities
- Menstruating women and girls with disabilities might face further discrimation and stigma
What does existing research tells us?
Most of the existing research has been done in developed countries, with only a few studies involving women and girls from low- and middle-income countries.
Autism: Research regarding the menstrual experience of women with autism compared to non-autistic women by Steward et al. 2018 in the UK found, that although autistic respondents reported many overlapping issues and experiences with non-autistic respondents, they also highlighted distinct—and sometimes-distressing—issues relating to menstruation, especially a cyclical amplification of autistic-related challenges, including sensory differences and difficulties with regulating emotion and behavior, which had a significant, negative impact on their lives.
Cognitive: Women with learning disabilities appear to be as likely to experience menstrual problems as other women. However, such problems may be experienced differently and more negatively and may not always be recognized appropriately. (Menstrual Problems Experienced by Women with Learning Disabilities. Jackie Rodgers , Jo Lipscombe Miriam Santer 2006 Access https://onlinelibrary.wiley.com/doi/full/10.1111/j.1468-3148.2006.00298.x).
Physically challenged: In a research comissioned by WSSCC with 2,463 women and girls across 10 States in Nigeria, not religious affilitation but culture significantly influenced menstrual hygiene management among physically challenged and marginalized women and adolescent girls. Access: http://www.wecf.eu/download/2016/December/NIGERIA_STUDY1MHM-WEP.pdf
Recommendations to assure good menstrual hygiene management
All persons with disabilities have the right to be treated equally & be included.
An inclusive programming approach means that barriers to the inclusion of persons with disabilities should be removed and they are empowered to participate fully in societal life. This also includes the days of the period!
In regard to Menstrual Hygiene Management, every women and girl, the should be able to manage there their monthly period safely, hygienically and with dignity. Specifically for women and girls with disabilities, the following recommendations apply:
- Raise awareness about the rights of people with disabilities and specifically the MHM needs for women and girls with disabilities
- Consider disability in the design, implementation, monitoring and evaluation of interventions. Ideally consult women and girls with disabilities in all stages of the intervention
- Provide access to relevant information in adequate form: depending on the disability this could be tactical tools or more audio-visual materials with sign language, or shorter sessions. It is particularly important that women with learning disabilities be supported to play a central role in recognizing and defining the problems they experience
- Appropriate WASH Infrastructure: we recommend to consider Handicap International’s RECU principle = Reach, Enter, Circulate and Use for latrines, bathing units and changing and washing places
- Ensure access to suitable menstrual hygiene products that are changed regularly and disposed of safely
- Ensure access to adequate health services and trained care takes (even within family)
Yet, as abilities vary, what might be beneficial for some women and girls may not be useful for others.
Programming experiences and tools
Women and girls with disabilities are currently under-represented in menstrual health management (MHM) programming and interventions, but there are a few interventions that included girls and women with disabilities in the programme design or specifically developed educational tools for them.
Vikalp Design, India
Already back in 2011, Vikapl and the Pearl Academy of Fashion developed the “Kahani Her Mahine Ki” – A Menstruation Kit – developed for the visually impaired young girls and women. The kit ” covers the subject of menstruation and how to manage during ‘periods’ and includes a life size human body model for demonstration, tactile diagrams and material and texts for the sighted and Braille for the visually impaired. Find out more: http://www.vikalpdesign.com/sadhvi_thukral.html
Femme International, Tanzania
In 2017, Femme International partnered with Youth with Disabilities Community Program (YDCP), an organisation in Tanga that provides services and life skills training to youth with disabilities, to bring the Feminine Health Empowerment Program to girls with disabilities, as well as providing training courses and sensitization for parents, the traditional Kungwis, parents and community leaders. Read more https://www.huffingtonpost.ca/sabrina-rubli/tanzanian-girls-with-disabilities_b_15537396.html
Huru International, Kenya
In their presentation during the MHM Virtual conference 2017, Huru International presented inclusive strategies for MHM programme design and implementation, including baseline data collection, trainings of girls and trainers. One example are educational seminars in sign language. Access the presentation here.
WaterAid and LSHTM, Nepal
Presented as a poster for the MHM Virtual conference 2018, WaterAid and the London School of Hygiene and Tropical Medicine presented research results on the different barriers women and girls face in Nepal, and how this was translated into a training package and tool for girls with intellectual impairment. Access the poster here.
WSSCC, India
The tactile book “As We Grow Up” and corresponding videos have been designed in consultation with visually impaired women and girls to break the silence on menstruation, provide spaces for dialogue and discussion, increased understanding and information. It was developed by the Water Supply and Sanitation Collaborative Council (WSSCC) in collaboration in consultation with blind and deaf women and girls together with the Centre of Excellence in Tactile Graphics (CoETG) – IIT, Delhi, Saksham Trust and Noida Deaf Society. The Ministry of Drinking Water and Sanitation in India, which released the tactile (perceptible to touch) book on 22 February at a national consultation hosted by the Ministry. An electronic and an audio version of the tactile book will also be available for persons who cannot read braille.
Access the booklets here in English and Hindi: https://www.wsscc.org/resources-feed/grow-tactile-book-menstrual-hygiene-management-facilitators-manual/
Access videos here: https://www.youtube.com/playlist?list=PLIYPAUq6fqp-YoemTTAQ-GfvWrpDX3szo
Want to be included?! Let us know and we are happy to include a description of your work here!