Over the last decade, Jane has focused her awareness and advocacy efforts to promote the well-being of People With Albinism by providing an opportunity for them, their families, and communities to celebrate diversity, challenge stigma, and celebrate each individual’s extraordinary uniqueness. With Positive Exposure Kenya, Jane is trying to create a mindset shift that will craft a more inclusive society that admires the beauty that we all share as human beings.
The New Idea
As a Person With Albinism (PWA) herself, Jane has taken some time to observe 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 side of the issue from an accessibility and human rights perspective. Through her organization, Jane is tackling the systemic problem at a national and, ultimately, at a Pan African level in a holistically way. She understands that in order to build a movement that advances in this fight, the issue needs to be tackled from three different angles: Advocacy & Awareness, Social Economic Empowerment, and Welfare and Social Protection.
Jane is also looking at an all-Africa movement to increase quality of life for PWA at all levels. For this, 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 came together to share the nature of the work, understand the needs of PWA, and jointly create a Regional Action Plan for Albinism which was approved by the African Union in 2019 and is mandatory for Member States to adopt at a National level. She also takes action at the grassroot level when it’s needed. For example, this year’s in-person International Albinism Awareness Day event was cancelled due to COVID-19, so she restructured the whole occasion into a virtual experience with guests speakers and participants from all over the world, interactive panels sessions and live artistic performances. Jane has the ability to easily identify the leaders across the continent to embrace this approach and together show that this is the new paradigm in the whole of Africa.
Stigma and discrimination of PWA in Kenya is deeply rooted in cultural misinformation and misconceptions. People will tend to believe what their forefathers believed, even if they know it’s wrong.
Chances are very high that a mother of a child born with such condition will think that her child is a “bad omen” or a “curse” and may abandon them. If the mother decides to keep the child, she may not know that her child will have extremely sensitive skin and sight problems for the rest of their life. Even in the remote case that the mother knows about these conditions and is well informed about the basic care, chances are also very high that witch doctors will request PWA body parts since they are believed to have supernatural powers. Finally, even if a PWA makes it to the end of their life and dies from natural causes, chances are that the remaining body parts will be unburied and sold in the black market for witchcraft purposes.
There are also systemic barriers that contribute to the root causes of this problem which is the fact that there are no existing policies that safeguard the lives of PWA. This means that even if a PWA has been disturbed by culture, lack of information, or arrogance from the society, there’s not a back-up law, policy, or a guideline that they can use to advocate and eventually to protect themselves. Additionally, the issues concerning PWA were stuck in reactive services model and the efforts around it were similar to those fighting to racism and stereotypes. For example, the organizations working on it were mainly providers of skin and eyecare products and services, supporting primary/secondary education for PWA and human rights efforts.
The social stigma and systemic discrimination around Albinism goes beyond the person who is born with this condition, it also deeply affects their families. Culture and lack of information play an important role in the root causes of the problem that rest upon the family. Beliefs amongst the community members could range from thinking that the mother has engaged in relationships with a white man or that such child is the consequence of a sin that the family has committed and, as a result, they are segregated from the community or end up abandoning the child. This is to say that there’s a lack of a support system in place not just for PWA but also for their family members as well that adds another layer of complexity to the problem.
As a person born with this genetic condition, Jane faced all the above scenarios: the midwife assisting her mother during the delivery ran away from the labor ward and later she was abandoned by her mother as a result of the cultural misinformation and taboos that having a PWA implied. Jane was brought up by her grandmother who refused to segregate her and decided to take her to a mainstream school instead of one for students with special needs against everyone’s comments.
Along her journey, Jane fought the Ministry of Education twice: during high school and at the Teacher Training College. Both times she pushed to pursue the subject/studies that she wanted instead of the ones that were imposed by the Education System given her condition and in both opportunities the results were positive. Moreover, during her years at the Teacher Training College, she created a student support club where students with special needs could also 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 colleague (teachers, students, and support staff) around this matter.
Jane understood that things had to be done in a different way from how they were done by the existing players in the field. For this reason, she saw the need to come up with a creative set of tools and “rituals” for partners to be able to use and build on to push the movement forward.
Awareness and Advocacy efforts revolve around the idea to create a mindset shift in the way the majority of society sees PWA. “Understanding Albinism” is one of Positive Exposure Kenya’s flagship programs in terms of public education. Through community albinism awareness forums, Jane and her team educate the audience targeting different segments of the 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 general public has about the topic. So far 2,000 people across four counties in Kenya have been educated through community albinism awareness forums.
Jane has organized the first ever Pan-African Albinism Conference resulting in a Regional Action Plan for Albinism adopted by the African Union; the goal now is to engage the Kenyan Government to have a national policy on albinism as a major step to tackle this issue in a holistically way.
She has participated actively in the 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 having PE-Kenya played a big role in advocating for it.
Jane has also organized the first ever “Climb for Albinism” which also helped to mobilize the public by bringing together seven PWA from different African countries to climb Mount Kilimanjaro, Africa’s highest peak. The message that they wanted to transmit was all about empowerment, resilience, and the embodiment of being strong despite the physical and emotional challenges. The stories of the participants were put together in a documentary which would be released and shared to contribute to changing the narrative around albinism.
One of her most recent innovations within her Awareness and Advocacy efforts is piloting the first ever mobile app, “Albinism and I”, an information hub where everyone (PWA, families and society as whole) interested to know more about Albinism can find all the answers and resources in one place. This tool also provides solutions across many different problems around albinism with the advantage that it is not space or time bounded, meaning that the information will remain through the years improving the lives of PWA and families at a global scale while bringing together different players in one place.
“Art for Albinism” is all about showcasing albinism in a creative way to promote awareness that accommodate the different tastes and preferences of the society while increasing the chances to penetrate the message to a wider audience. Jane engages in healthy collaborations with artists from different disciplines who create artistic expressions with positive messages and, in many opportunities, serve as ice breakers to start uncomfortable conversations. They have created documentaries, performing arts, photo exhibitions, and modeling events, among other platforms to spread on the message. In the past they have done exhibitions in the American Corner, shopping centers, and during the biggest Africa Conference on Sexual and Reproductive Health Rights in Nairobi. The most recent was during the International Albinism Awareness Day which happened in June 2020 where one of the sessions revolved around artistic expressions to promote awareness under the message Change how you see, see how you change.
In terms of Social and Economic Empowerment she is running two main programs: SEED and Mentorship.
SEED: the program supports entrepreneurship and economic development by establishing a network of support groups for PWA and their families which they can engage and initiate income generating activities either as an individually or in a group. PE-K equips these groups with business and entrepreneurship skills that are translated to income as well as providing seed funding or linking these groups to funding sources for economic empower activities. PE-K has replicated SEED projects in Mombasa, Nairobi, Nyeri, Migori, and Kirinyaga counties with an impact on 20 households with women affected by albinism who completed the SEED training program 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 the society), ultimately “becoming their own voices”. So far, the Organization has mentored 600 cross generational PWA (on a ratio of 100 people/year).
Welfare and Social protection includes 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 network who are able to provide medical services for PWA; they inform them about what the government is providing and guide them where to find what. In cases when the organization is requested a service, product or information that escape their knowledge, capacity, or offerings, they are in a unique position to link the person to the appropriate solution.
“Education Rescue” is another approach within the same pillar and is on a case by case basis to ensure early intervention so that no child with albinism fails to go to school. It also provides resources such as glasses, magnifiers and other resources needed by PWA. The organization also works closely with Primary and Secondary schools to help them understand how to handle a student with albinism in a classroom set up and prevent them to be stigmatized by their classmates. Under this program they had assisted 50 students by either:
Sponsored on needs basis and on a Co shared responsibility
Ensured children with albinism attend integrated schools and those in special schools get readmitted to mainstream schools.
They have also sensitized, educated, and informed 100 teachers spread over 15 Primary/Secondary schools in the country with information about Albinism and how to handle PWA in a classroom setting.
The Rare Voices project is targeted to women where they provide a safe space to engage in supportive conversations around deep and intimate topics such as sexual and reproductive health. This initiative has impacted the life of 50 women either with albinism or family members of PWAS by providing a safe space to share their experience and feeling understood and supported.
Jane’s approach has the potential of scaling at regional level and ultimately at a continental level since the information gap and misconceptions around PWA is spread all over the African continent. This said, she has been working on more awareness materials with the support of Making More Health (by BI); for example, she is creating a website with medical information for teachers, parents and relatives for them to know what can they do in terms of health for PWA. They have also worked on a training binder which they have been sharing across many countries with and a quiz to test the knowledge around Albinism. This means that, even though other continents may not have the same cultural beliefs about PWA, there is still an opportunity to make use of the awareness materials that Jane has created and contribute to the knowledge about this cause.
In terms of plans to spread her idea at in international level, she has organized the first ever Pan-African Albinism Conference resulting in a Regional Action Plan for Albinism adopted by the African Union. The goal now is to engage the Kenyan Government to have a national policy on albinism and encourage other sister organizations within the region to do the necessary internal advocacy to engage the local Government to develop national policies for PWA.
Born in a rural village in the slopes of Mount Kenya, Jane recalls being the only one who looked like her amongst the Kikuyu tribe community in the area.
Her grandmother raised her and sent her to a public school with 1000 other black kids, none of them suffering from Albinism. Jane knew she had writing problems, but it wasn’t until German missionaries came to her school when she was 12 that she learned that she needed glasses to see, and that this was related to her albinism. Even with glasses she needed a telescope to see the blackboard in school. She then attended an all-girls boarding school, none of them with Albinism. She was initially denied the right to study Sciences and so she wrote to the Ministry of Education asking for the right to study Science and Math. The Ministry supported her. At school she was involved in Girl Guides and enjoyed doing conservation and humanitarian work. After graduating secondary school in 2004, missionaries intervened again, supporting her financially to go to a Teachers College. At college, for the first time ever, she met other young people with Albinism. As was the common practice across the country, students with Albinism were normally sent to schools for the blind for secondary school. Jane had never been segregated in this way. Again, she got the Ministry to allow her to major in Science and Math, started a Special Needs Club and began organizing. 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 with 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.
Later on, Jane met a New York based fashion photographer who travelled to India inspired by her story which was featured in Kanthari’s newsletter. This encounter empowered her, revolutionizing the way she understood beauty and ultimately impacting her self-acceptance and self-esteem.
When Jane entered into the field, after the one-year Social Entrepreneurship course in Kerala, India, she took time to understand where the system was standing at in terms of addressing the roots of the problem and where the main gaps were. She came in with a different mindset and saw an opportunity not by just differentiating from those players already in the field, but by working together with them and leveraging on their strengths to create a holistic approach that ultimately improves the life of PWA in the region and their families.
At the time when killings of PWA were starting to rise in Kenya, Jane received offers to study and work overseas. However, she feared that if she accepted, no one would do what it takes to change the reality of PWA in Kenya. For this reason, she decided to go back home and start her organization “to ensure that no other child born with albinism will ever grow [up] thinking that they are the only ones like them and to make sure that parents also know what albinism is about. By doing this, society will be able to normalize albinism and remove the stigmas, cultural beliefs and taboos.”
Jane believes in her legacy and the next generation who will carry on the fight for PWA. For this reason, she is always trying to bring the youth, and the other people working with her, on board and expose them to see the direction in which the movement is heading to – just like what her grandmother did with her when she pushed Jane to go to mainstream education. This is a typical quality of an emerging leader that cuts across multiple forms of systemic discrimination around the world.