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“People don’t touch my hands because they think, if she can’t see, how does she know she’s having her period?”

30 May 2019
People with disabilities were typically left out when education was provided on menstrual hygiene and the menstrual cycle, says Munyaradzi Mutsinze, who is visually impaired. © UNFPA ESARO/Lindiwe Siyaya

JOHANNESBURG, South Africa—“Do you know why people don’t touch our hands? Because they are thinking, if she’s [having] her period, how does she see she’s [having] it?”  

Managing one’s menstrual health can be a challenge for many girls and women in East and Southern Africa as it is, but what if you’re also visually impaired?

Munyaradzi Mutsinze, 27, from Malawi, explains that this brings its own set of challenges.

“They think you go [to the toilet], you touch, you smell and then, okay, now this is blood, you’re [having] your period. They don’t know that you count [the days] and that there are all these other signs and, of course, [your] instinct,” she says.

Young people with disabilities excluded from menstrual health education

A day prior to World Menstrual Hygiene Day on May 28, Ms. Mutsinze agreed to be interviewed during a three-day meeting she was attending on providing rights-based and gender-responsive sexual and reproductive health services for women and young people with disabilities, organized by UNFPA.

While growing up, she said, people with disabilities were typically left out when education was provided on menstrual hygiene and the menstrual cycle.

“I only realized that I was different when I was in secondary school because in primary school, people don’t care [about disabilities]. They just hold your hand [as] they think it’s fun. Then in secondary school, you’re now teenagers [and] everybody is discovering themselves. So they are thinking, should I touch her?”

“People have all these crazy things going on in their minds [...] You can literally know now that you’re different.”

Ms. Mutsinze was in boarding school in Blantyre, Malawi, when she had her first period at the age of 15 and stained her dress. One of her peers reported the incident to the matron.

“The matron, instead of explaining what had happened to me, said, here’s how you look after yourself. She had a cloth and she said, this is how you wear it. And from now on, you’re going to [get] pregnant if you sleep with a man…” In explaining this scenario, she drops her hands to her sides and indicates her confusion at the woman’s words.

"People don't provide information"

The matron went no further with her explanation. She didn’t describe the signs, symptoms nor frequency of periods, nor things to look out for, like premenstrual syndrome (PMS). She didn’t tell her how to estimate the number of days before her next period, to prepare for it.

“People don’t provide this information, so you don’t know that it will happen every month,” she says.

But two months later she stopped having periods due to a condition she wasn’t aware, which self-corrected after about eight months. Her aunt, who was looking after her, hadn’t been informed that she had started menstruating.

Then a year after menarche, she realised that she had been wearing her pad incorrectly, thanks to a friend who offered to take her to the toilet when she had period pain and who taught her how to use it. She laughs as she explains that she used to wear the pads complete with all their trimmings. 

When she was 16, her aunt, who was her guardian following her mother’s death a year earlier, gave her a tampon but didn’t explain how to use it. Her aunt inserted it for her.

“She said it can stay [inside] as long as it can, even [until] tomorrow. But then, [she] didn’t know that I hadn’t had my period for eight months so I had the heaviest flow ever. So now my tampon was [being] changed every four hours and she said, let’s use cotton wool and just change it when you feel you’re wet,” Ms. Mutsinze says.

But naturally, she faced issues with this approach.

Becoming comfortable with managing menstrual cycle

It took her three years to fully understand and be comfortable with managing her menstrual cycle. That occurred after she attended training in sexual and reproductive health and rights, hosted by the Malawi Girl Guides Association (MAGGA). She learned how to count the days between her menstrual cycles, when to change her menstrual products, and how to maintain good hygiene during her period.

Today, Ms. Mutsinze is a self-confident radio presenter. She is also a regional trainer on disability mainstreaming, which involves ensuring that people with disabilities are equipped to adjust to being with their non-disabled peers and to adapt to the demands of regular activities. This work requires her to traverse the region educating and advocating for the rights of people with disabilities.

In The Right to Access, the Regional Strategic Guidance to Increase Access to Sexual and Reproductive Health and Rights for Young Persons with Disabilities in East and Southern Africa (2017), it is recommended that countries should regard youth with disabilities as a vulnerable group. This categorization would help to ensure that disabled youth are included in programmatic and funding responses.

The report also recommends that countries should continue to develop a youth-friendly services strategy for health-care services. The needs of young people with disabilities should become mainstream in this process, for example by consulting with young people with disabilities on the specific challenges and barriers they experience, which may vary by country, and ensuring that policies, strategies and initiatives to improve access to services by youth pay specific attention to those with disabilities as part of the youth audience.

- Lindiwe Siyaya