Living with albinism, 27-year-old Vumilia Mukamana is a single mother of Nyamirambo neighbourhood in Nyarugenge District of Kigali. Although she has not had a chance to finish her studies due to countless reasons, one of which is visual impairment, Vumilia, mother of one, is still a confident and resilient woman.
To support herself and her child, Vumilia who is one of the women benefiting from our programs, started by taking sewing courses and is now being trained on the art of soap making, so she can start her own business. She hopes that working with fellow women in cooperatives and being as hardworking as she can be, will help her build her desired tomorrow.
In this exclusive chat with Vumilia, she opens up on various challenges she faces as a person with disability, and how she strives to overcome those barriers.
Vumilia, on 13 June, the world marks the International Albinism Awareness Day. What does this day mean to you?
This day means a lot to me as a person with albinism. It reminds us of our rights as human beings and helps boost awareness of this disability. Speaking from experience, some people with albinism don’t even know that it’s a disability, they think that it’s an abnormality and has an impact on their confidence and creates depression and fear of expression. This day also helps the society to understand our disability and prevents the social stigma that is usually associated with it, helps promote unity among us and amplify our voices.
As a person with albinism and a young single mother, what are some of the biggest challenges you face and how do you overcome those?
Being a single mother with albinism is an indescribable challenge. I face multiple forms of discrimination, social stigma, accessing services, rights denial and gender based violence. Luckily, sometimes I get involved in different activities of organisations that promote women’s rights and rights of people with disabilities. This improves my confidence and makes me feel valued.
I no longer hide myself or my child, I can express myself and engage in any activity of my choice including joining others so we can empower each other and learn from one another.
How difficult is it for you to access Sexual Reproductive Health and Rights services and information?
To be honest it is not easy at all. In general, both myself and people with disabilities face numerous challenges in accessing service and information on SRHR. We mostly get judged and asked some unnecessary questions because of our disabilities. This causes service delays and in some cases, we end up giving up. We are mostly requested to come with our husbands yet we don’t have them. Most of our children’s fathers have abandoned us because they don’t want to be known for having impregnated a woman with disability among other beliefs and myths influenced by superstition. Speaking for my fellows, this leads to issues such as unsafe abortions, mental health issues, rights denial and many more.
What’s your take on albinism and sexual and gender-based violence (SGBV)?
Generally, women with disabilities are considered weak. We get sexually abused by people who want to engage in intimate relationships with us, not because of love but because they want to take sexaul advantage of us, thinking that people with disabilities heal mischances.
Specifically for single-mothers with disabilities, we get to deal with problems of men’s denial to take responsibilities in raising children and registering them as requested. We face sexual and domestic abuse before our husbands disappear. The saddest part is when our families also don’t believe in us enough, or don’t support our growth, most of them really don’t care and they think we are posing an added burden to them.
Finally, what’s your message to fellow women with disabilities especially with albinism?
My message to fellow women with disabilities is simple. We have to develop our self-confidence and know that disability is not inability. We’re all valuable members of society like any other human being with equal rights.
We just need to change our mindset and distance ourselves from societal stigma and instead actively engage in community development activities for a better tomorrow.