Jane has made the de-stigmatization and advancement of people living with albinism a national policy priority for Kenya. With the explicit endorsement of the African Union, it has become an urgent policy priority for all the member states. Her latest innovation, “Albinism and I”, is an online initiative to be rolled out in 2024 with the goal of creating and linking communities of support for people living with albinism across Africa as well as extending to other regions of the world.
The New Idea
Stigma and discrimination against Persons with Albinism (PWA) in the African continent are deeply rooted in cultural misinformation and misconceptions. People believe what their forefathers did, even if they know it’s wrong. It is very likely that a mother of a child with albinism thinks that her child is a “bad omen” and may abandon them as soon as she leaves the labor ward. If she decides to keep her child, she may not know early enough that they will have extremely sensitive skin and sight problems for the rest of their life. Later on, this child will most likely be a victim of physical harassment.
For the last decade, Jane has observed the patterns of the different approaches of various organizations working around Albinism in the region. She noticed that the scattered efforts tend to focus on a reactive approach seeing the disability from an accessibility and human rights perspective. Through her organization, Jane is holistically tackling the systemic problem at a national and, ultimately, at a Pan-African level. She understands that to build a movement that advances this fight, the issue needs to be tackled from three different angles: Advocacy & Awareness, Social Economic Empowerment, and Welfare and Social Protection.
Jane is looking at an all-Africa movement to increase the quality of life for PWA at all levels. She has organized the first-ever Pan-African Albinism Conference inviting 47 representative organizations from all over the continent including the UN Special Reporter on Albinism. They jointly created a Regional Action Plan on Albinism which was approved by the African Union with mandatory implementation for Member States at a National level.
From a global standpoint, Covid-19 helped Jane catalyze her impact by digitalizing most of their services and making them available to last-mile beneficiaries. “Albinism and I” is a mobile and web app where everyone (PWA, families and society as whole) interested in knowing about Albinism can find answers and resources with country specifics. It is currently being tested in Kenya, and she is aiming to go worldwide by June 2024.
Jane experienced the effects of popular misconceptions of people with albinism (PWA) firsthand. The nurse assisting her mom during her delivery left the ward the moment she saw Jane because she had never seen a child with albinism and didn’t know how to proceed. Her mother also abandoned Jane, refusing to accept that she was her child.
During her childhood, Jane faced challenges associated with poor vision and skin care without receiving any support from the school or her immediate family, nobody understood that those were common conditions amongst PWA. Jane was also a victim of physical harassment; students in primary school cut her skin to see whether she bled like any other human being. Jane recalls being the only person that looked like her in her community until she went to college.
Jane’s struggles are similar in most African countries, and they are not very different from those on other continents. One of the root causes that retains this problem is the lack of existing policies to safeguard the lives of PWA. This means that a PWA who has been disturbed by culture, lack of information, and arrogance from society, cannot find protection in any law, policy, or guideline. A mix of cultural and systemic barriers are the main causes of this issue affecting around 10,000 people in Kenya and around 40,000 in East Africa.
The social stigma and systemic discrimination around albinism go beyond the person who is born with this condition, it also deeply affects their families. Culture and lack of information is the root cause of this problem. Beliefs amongst the community members could range from thinking that the mother has engaged in relationships with a white man or that such a child is the consequence of a sin that the family has committed. As a result, PWA and their families are segregated from their communities.
Jane understood that things had to be done differently. For this reason, she came up with a creative set of tools and “rituals” for different stakeholders to build on to push the movement forward.
Her awareness and advocacy efforts revolve around the idea of creating a mindset shift in the way the majority of society sees PWA. “Understanding Albinism” is one of Positive Exposure Kenya’s (PE-K) flagship programs in terms of public education. Through community albinism awareness forums, Jane and her team educate the audience by targeting different segments of society who are strong opinion shapers (public administrators, churches, elderly, among others) with facts about albinism as an entry door to demystifying the misconceptions that the public has about the topic. So far 5,000 people across 17 counties in Kenya have been educated through community albinism awareness forums.
“Albinism and I”, the first ever mobile app dedicated to albinism, is one of Jane’s most recent innovations within her awareness and advocacy efforts. The app was developed in partnership with Boehringer Ingelheim (a German pharmaceutical company) and serves as an information hub with resources through literature, animations, and podcasts. It also provides solutions on matters of health, education, social empowerment, and service providers including a mentorship platform where PWA can connect virtually. The app is undergoing the last stage of the pilot collecting feedback from University of Nairobi School of Medicine, The Ministry of Innovation & Social Protection, The National Gender and Equality Commission, Kenya Medical Practitioners, Pharmacists and Dentists (KMPDU), amongst other groups close to Jane.
“Albinism and I” has the potential to become a life changer if it’s in the right hands. For example, Jane has made it available to a pilot group of nurses/midwives who assisted mothers in the delivery of their newborn children with albinism and were ready to abandon them (as happened to Jane). However, the nurses/midwives informed the mothers about the condition, shared the app with them, and finally changed their minds. There is also value in extending to employers who are keen to learn about accommodative practices for employees with albinism. The test is currently being done with Unilever and Making More Health.
There are approximately 76.1 million persons with albinism in the world, and one of the advantages of using new technologies is that it’s not space or time bounded, meaning that the information will remain through the years improving the lives of PWA and families on a global scale while bringing together different players in one place. Out of the 7,600 persons with albinism in Kenya who have access to a smart phone, 330 have been informed and taught on the functionalities of the app. As part of the dissemination strategy, Jane will run activation campaigns in different communities around Kenya in the second half of 2023 and by June 2024 she will launch it at a global level.
Jane has two flagship programs around social and economic empowerment:
SEED: supporting entrepreneurship and economic development by establishing a network of support groups for PWA and their families to initiate income-generating activities either individually or in a group. PE-K equips these groups with business and entrepreneurship skills that are translated to income. They also provide seed funding or link these groups to funding sources for economic empowerment activities. PE-K has replicated SEED projects in Mombasa, Nairobi, Nyeri, Migori, Kirinyaga, Nakuru, Bungoma, Kiambu, Muranga and Machakos counties with an impact on 79 households with women affected by albinism who completed training programs on business and entrepreneurship, sewing, batik making, waxing, and beading.
Mentorship: focused on young PWA (but open to children and adults as well). Their biggest goal is to create self-advocates by using the following model: Self Awareness (understanding your condition) = Self-Acceptance (loving yourself) = Self-esteem (building confidence) = Self Advocacy (fully living your potential without being put down by society), ultimately “becoming their own voices”. So far, the PE-K has mentored 1000+ cross-generational PWA (on a ratio of 100 people/year).
PE-K also focuses on welfare and social protection including programs that address the very significant needs of PWA, which are eye and skin care. However, they also tackle issues like HIV and Sexual and Reproductive Health Rights. PE-K has sound knowledge about existing systems and networks that are able to provide medical services for PWA; they inform them about services provided by the government and how to access them. In cases when the organization is requested for a service, product, or information that escapes their knowledge, capacity, or offerings, they are in a unique position to connect them to the appropriate partner.
“Education Rescue” is another program within the same pillar and is on a case-by-case basis to ensure early intervention so that all children with albinism go to school. It also provides glasses, magnifiers and other resources needed by PWA. The organization works closely with Primary and Secondary schools to help them understand how to handle a student with albinism in a classroom setup and prevent them from being stigmatized by their classmates. Additionally, Jane actively participates in discussions with the Kenya Institute for Curriculum Development in the elaboration of the new curricula in Public Schools which now includes Human Rights content for Grades 1,2,3.
At a national policy level, Positive Exposure Kenya was the leading organization mapping the existing laws, policies, organizations and programs on albinism, and existing gaps submitted to Kenya National Human Rights Commission. This 108-page study was launched in May 2023 with a set of recommendations that will inform the National Policy on Albinism addressing the existing gaps. Jane has a solid overview of where each of the 42 counties in Kenya are at in terms of advancing the albinism agenda and will execute her support plan with local organizations once the Attorney General approves the policy.
Jane’s approach has the potential of scaling at a regional level and ultimately at a continental level since the information gap and misconceptions around PWA are spread all over the African continent and beyond. In early 2023, Jane participated in a review of a Regional Action Plan on Albinism together with other organizations and representatives from the Africa Union. All member states must comply with the Action Plan by 2030 with appointed local organizations monitoring the implementation. On this backdrop, Jane has developed a criteria and framework to understand which countries are the early adopters, the late majority, and the laggards in the region, as well as the local partners who are driving the agenda forward and supporting them.
Throughout her life, Jane has risen above the circumstances that came her way. She was abandoned by her mother immediately after she was born and was raised by her grandmother despite all the cultural beliefs about PWA.
In primary school, Jane had to overcome different situations which nurtured her leadership skills. At the age of 12, a group of German missionaries visited her school and explained to everyone, including Jane, what albinism was about and gave her a pair of glasses. After this visit, Jane received more acceptance from her schoolmates.
In secondary school, Jane found herself unable to participate in outdoor games and sports clubs due to her skin being extremely sensitive to UV light, another condition of PWA. Consequently, she started a Special Needs Club where she and other students with special needs, could fit in. The idea wasn’t just to support each other and create a safe space to share their experiences, but also to sensitize the entire college (teachers, students and support staff) about this matter.
After graduating from secondary school in 2004, missionaries intervened again, supporting her financially to go to a college for teachers where she met other PWA for the first time in her life. When the time came to choose her Major, Jane was initially denied the right to study science given a policy from the Ministry of Education that only allowed visually impaired learners to pursue art-oriented Majors. Jane, with a passion for science, found herself lobbying and convincing the Ministry to allow her to do a science-oriented Major, becoming the first visually impaired student in the college to accomplish this.
The tenacity and boldness of her efforts caught the attention of a professor who recommended her for a one-year Fellowship at the India School for Social Entrepreneurship in Kerala. The curriculum perfectly matched what Jane always wanted to do: understanding the root causes and finding solutions to the challenges that PWA were facing in Africa. She used this time to refine what is today Positive Exposure Kenya.
Upon the finalization of the fellowship program, Jane received several jobs offers in India and Europe at a time when attacks and killings of PWA were rampant in Kenya. However, Jane decided to return to her country and found the first organization purely dedicated to supporting the community of PWA and their families in the region.