Written by Upenyu Makoni-Muchemwa
People living with disabilities (PLWDs) face multiple and complex challenges in Zimbabwe. As well as the challenges unique to their disability, people living with disabilities also face social and structural exclusion leading to negative stereotyping and stigmatisation and are less likely to participate in most social activities and governance processes. The same challenges also affect people from ethnic minorities that have been marginalised from State-led development for many years. At the nexus of these challenges is 2020 Voice2Rep Zimbabwe Finalist Marvellous Tshuma, stage name Marve Tee, a young woman from Binga, and a member of the baTonga community.
Marvellous grew up in the village of Samende Syabanga in Binga, attending Samende Primary School.
“Being the only person with albinism in the whole family brought a lot of talk and it was not nice, but it didn’t affect me at all because my mother and uncle loved and cared for me. As a person with albinism I experienced discrimination and societal segregation but that made me the stronger being I am today and it became the foundation of the work I do.”
Albinism is a common genetic condition in Zimbabwe, affecting approximately one in 5,000 people. Albinism is a group of genetic conditions resulting in insufficient or no melanin production by the skin, leading to little or no pigmentation in the hair, skin and eyes. Without melanin, people with albinism face several health challenges including problems with visions such as sensitivity to light, and imapired vision as well as an increased risk of developing skin cancer. Marvellous later moved away from Binga, to a cooler climate as the heat negatively impacted her health.
Like many people living with Albinism, Marvellous faces stigmatization and social exclusion. There are several myths about albinism, including beliefs that it is caused by the mother having relations with evil spirits or that the parents are being punished by their god for evil-doing. As a result of the stigma associated with albinism, children born with albinism are often brought up in single parent homes or by their extended family. In addition, the cost of treatments and preventive measures against sunburn and other disorders are prohibitively high, with a bottle of sunscreen averaging USD10 in cost, while the average monthly salary is less than USD100. People living with albinism also face challenges like visual impairment and extreme vulnerability to skin infections and cancer because of insufficient melanin in their skin. As a result, most die from skin cancer before the age of 40. For Marvellous, these challenges are exacerbated by the fact that she is Tonga, a minority ethnic group from Binga, a very marginalized and remote community in Matabeleland North. The Tonga language, spoken in Binga, is hardly recognized despite the fact that it is one of the 16 official Languages in the Zimbabwe Constitution.
Marve Tee is a talented musician who has a passion for advancing the rights of people living with albinism and the Tonga language using her music. Unfortunately, scarce resources, among other challenges faced by artists in Zimbabwe, have limited the extent to which her music and work is recognized and supported. As a finalist in the Voice2Rep Campaign, Marve received training that provided her with a deeper appreciation of the structural roots of the issues her communities face, and strengthened her skills as an advocate for social justice. The campaign also helped her to polish her lyricism, and provided her with access to a recording suite through which her song Tulemekane, a song about unity, was produced for the album Freedom.
Following her participation in the campaign Marvellous is a more vocal and effective advocate for the rights of people with albinism. Marvellous channels her activism through Albinism Konnect, an initiative of the Noble Hands Trust in which she is National Chairperson. The initiative mobilizes funds to assist people living with albinism to secure sunglasses, hats, sunscreen lotion, and health care among other treatments. Through the campaign, she has been featured on multiple media platforms including the Chronicle and Divas Inc Magazine.
“This is very personal to me because when I look at how I grew up, I’m moved to soldier on and help others with albinism to endure life better than I did.” Marve uses social media as a platform to raise awareness about the challenges her communities face, to fund raise and promote greater understanding of the condition among her audiences. She also advocates for people with albinism to access health services that are dedicated to the treatment and management of their condition.
“From my perspective as a person with albinism, I would say we need a standalone cancer clinic for people with albinism to treat these cancers when they are still in the initial stage.”
Marve Tee’s journey through Voice2rep cemented her personal commitment to activism that brings tangible changes in the lives of others in the albino and BaTonga community. Her V2R journey speaks directly to the aspirations of the project to identify, amplify and support young, socially conscious artists. It also served as a showcase of the project’s intentionality in recruiting and including participants from marginalized communities. There is little doubt that beyond participation in Voice2Rep, Marve Tee will continue to be an agent of change in her communities and will be a shining light for future V2R cohorts.
Upenyu Makoni-Muchemwa is the Strategic Communications Officer for Accountability Lab Zimbabwe