By 
They are born in a society like everybody else yet they have never gained acceptance let alone meaningful recognition accorded to every other human being. They never know that they are different from others as they see themselves as equals who are normal beings, only to discover and learn as they grow that they are different and thus they should be treated differently from other human beings. Such is the plight of people with albinism (PWA).
A research undertaken by the American Academy of Dermatology published in its 2019 journal indicated that the albinism prevalence rate is estimated between 1 in 5 000 and 1 in 15 000. Whilst taking note that Tanzania and Malawi top the list of Southern African countries with the highest population of people with albinism. Furthermore estimates indicated that a total of 100 000 PWA are found in the SADC Region. It is therefore in that regard that SADC Youth Forum (SAYof), an annual young people’s summit hosted by various countries that are member states to the regional body convened in 2020 which was the 2nd summit that marked the formation of a Disability Committee as one of the summit’s Thermatic areas. The committee was tasked with the responsibility to promote, advance and champion disability issues with an aim to drive the disabilty agenda and transform the discourse of discussing and pushing for the recognition and prioritisation of disability rights.
As a disability development consultant and disability rights defender, i was engaged to represent Zimbabwe leading in expert advice so as to set the right tone as far as disability issues are concerned. It is during the disability session that a list of key asks where tabled which included putting in place a mechanism to protect young people with albinism from killings and abductions. As well as ensuring that there is a robust criminal justice system to decisively deal with attacks on young PWA. Due to unfounded and misconstrued myths and misconceptions, such people live in fear and they constantly have to learn and implore survival tactics in order to evade death by a whisker. They are constantly killed mercilessly and brutally tortured as it is believed that their body parts can be used as lucky chams while others believe unprotected sexual intercourse would cure one of the longest health pandemic, HIV/AIDS.
As a follow up from the previous youth summit, the 2021 summit hosted by Malawi running under the theme “Blue and Green Economy for sustainable development” ran from the 10th to the 13th of August. Its key priority focus being to emphasize talk with action. The committee was tasked with the mandate to plan and virtually launch a campaign on the 13th dubbed “SADC Youth Champions for the Albinism Agenda”. (SAYCAA). The objectives of the campaign being to provide suncreen lotions to young PWA from vulnerable communities of SADC countries, to mobilise resources to support education for young PWA living in SADC countries and lastly to undertake sustainable advocacy for the rights of young PWA in the region. 4 participants with albinism were chosen from Zimbabwe to grace the auspicious and historical occassion since the inception of the youth summit. These include Bruce Nyoni who was the facilitator for the day, Lindokuhle Nancy Mnkandla and Rufaro Chinyanza were panelists and Marvelous Tshuma a renowned artist. Marco Masumbuko from Tanzania was a panelist and the guest speaker came from Malawi namely Chikondi Kanjadza.
The main aim of the event was to raise awareness on issues affecting this group of people and the smart solutions they believe would change the face of albinism at a regional land scape. Emphasis was made on issues to do with health care calling for National Health Insurance Schemes to be set up in member states so as to facilitate free cancer screening and treatment, as skin cancer continues to claim lives within the cluster as a result of failure to have constant supply of sunscreen lotions that are pivotal in a person with albinism’s life. Due to exorbitant prices charged for sunscreen lotions that range between US$10 to US$15 on average which are beyond affordability for many, thus they called for a fair, equitable and transparent tax justice system that would see free provision of such health care products. Education as a catalyst to model development was also a key sector touched on. The take home message was that, by making ease of access to education for many children with albinism as a basic right, they could become investors and donors in future leading to access to services and provision of necessities being for free. Miss Chikondi officially launched the campaign that seeks to mobilise and distribute 80 000 sunscreen lotions. She highlighted that the campaign would be re-launched at country level and ad hoc committees would be set up comprising of organisations of persons with albinism working in collaboration with SADC youth forum country directors.
The event ended with a show stopper performance from Marvelous affectionately known as Queen of Batonga. The albinism community proved that in the face of adversity they continue to have strength beyond all odds.
Compiled by
Tsepang T. Nare
