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The New Idea
The Albinism & I digital platform. This is an innovation by Positive Exposure-Kenya an albinism education & advocacy organization that exists to promote the well-being of persons with albinism (PWA) by providing an opportunity for PWA, their families and communities to celebrate diversity, challenge stigma and celebrate each individuals’ extraordinary uniqueness. This Project is going to be the first of its kind in Africa and will provide a creative, innovative and sustainable digital platform that informs, connects and empowers Persons with albinism (PWA), their relations & society. Digitalization and virtual campaign has become a necessity in each organization that is looking to improve members’ interaction between themselves and between the digital evolving worlds concisely. Internet and cloud solutions have become a new ecosystem with unlimited resources that we believe Positive Exposure –Kenya should utilize by making use available technologies like cloud computing, big data, content personalization and internet penetration. A mobile app with a standard PE-Kenya portal will push the organization into the digital skyrocketing world into another interaction and efficiency level, which will in turn have a ripple effect in sustainability of the organization.
Some of the main modules in the app include and not limited to:
• User register / Login: clients will be able to create an account and login
• Art for Albinism: This will be a virtual exhibition with a story to tell.
• Knowledge center: Here PE will be posting important content to be accessed by their users.
• Job center: members can view jobs available
• Social center: members can update profile and share stories in the app what of those who may want their stories to be anonymous
• Mentorship and support: members can submit their requests to be assessed by the PE managers
• E magazine: Members will be able to access periodic Albinism and I Magazine.
• Magazine Submission: Members will be able to submit content to be published on the magazine
• Unique collections: Members will be able to access and publish their unique collection products to the ecommerce module.
• Innovation Corner : P&E will be publishing important innovation by their members at this corner apart from that let there be a challenge or calls for innovation
All these functionalities are new and sustainable solutions in addressing the information gap, stigma and misconceptions around albinism.
• Continued awareness and advocacy digitally & virtually to PWAs & the public.
• Positive visibility of people with albinism
• Linkages and networking for easier access to essential services like eye care and skin care for PWAs.
• Economic empowerment where beneficiaries will be able to access and sell their products via the Unique collections e –commerce platform .
What is the impact of the problem and why does it persist?
The emergence of Covid19 earlier this year as a global pandemic has had a lot of impact on organizations programming. At Positive Exposure- Kenya an albinism education & advocacy organization operating in Kenya with influence across Africa, since our work addresses the lifelong needs of persons with albinism a community of high alert in Africa, this therefore requires the organization to continue doing the work they do even with the COVID19 restrictions like social distancing. On this backdrop and acknowledging albinism as a public health issue with cradle to grave needs the organization plans to roll out a comprehensive Albinism & I digital and multimedia project to continue raising awareness and promoting the rights of PWAs in different tenets .
Albinism & I digital platform will build its momentum on PE-Kenya’s ongoing projects. Positive Exposure-Kenya, will implement the Albinism & I digital platform in line with the organization’s mandate to embrace, respect and celebrate difference and diversity among the albinism community. This provides an opportunity to create a digital, physical and virtual comprehensive strategy that puts persons with albinism and issues that affect them on the frontline.
P.E-Kenya deems education as the biggest driver of advocacy on issues that pertain to albinism and specifically availing the correct knowledge resources to the right audience. The platform will go a long way in reaching out and bringing together a wider community to start with at a national level into a safe and free space where PWA can engage and find solutions on matters on health, education and social empowerment. As such, we would realize a bigger mileage on availing authenticated information and education coupled with consequent improved service delivery, demystifying myths on albinism with factual data and ultimate data disaggregation. The huge network of the albinism community and other relevant users will benefit from professional referrals and the FAQs on the APP, which is important for formation of solid support systems for PWA.
In totality, P.E-Kenya expects a massive increase of awareness and advocacy for PWA, finding solutions for various issues that affect PWA either in upbringing, education, health care and minimize the social stigma inflicted to PWA. The resulting networking platform will be a major tool in equipping PWA with relevant life skills and build their capacity towards realization of their full potential in all spheres of life. With this empowerment, PWA will develop their self-awareness and become self-advocates and ultimately reduce the number of attacks and violations of human rights on PWA at a national or regional level
The Albinism & I digital platform in 5-10 years will be able to :
- Scale up the different modules to capture emerging issues.
- Replication of content to capture broader context in terms of language, culture & social economic status.
- Capability to handle large number of connections from the users side and the back end API to handle errors in compatibility with emerging technologies such as IoT and big data to solve issues relating to albinism .
I was born in Central Kenya in the late 80`s to a teenage mother who abandoned me as a toddler. A Kikuyu proverb says, "It is not a great thing to give birth to a child, but to raise it, which is one." This mystery revealed itself to me when I was a teenager and my grandmother told me that she was not my mother. I had lived all these years in the belief that she was my biological mother. This was a very shocking moment and added to the multiple challenges I was going through. My grandmother described the events at that time as if they had just taken place; it was so clear and vivid in her mind. She was full of sadness about her daughter's behavior. There was no room for me to ask questions because I did not want to hurt her feelings. She narrated to me how my biological mother went away when I was a toddler, never to come back. This happened mainly because of my skin color, or rather the lack of it. I have albinism, which is a recessive genetic condition that leads to little or no Melanin. In Kenya & Africa at large, there are many negative misconceptions about the condition coupled with stigma and discrimination. Data available indicates that one in every 5000 people in a given population has albinism (1:5000) for Africa with some of the countries in East Africa having a ratio of 1:3000. Reasons for this high occurrence have not been verified. Therefore, more research needs to be done to explain the frequency since the rest of the world has 1:17000.
My ‘mother’, who was a casual laborer and carried me everywhere she went amidst nonstop stares from people, raised me. My childhood was not easy as my grandmother had little laughing moments. This was because she had no knowledge of the care my condition required and knew nothing about things like prescription glasses and sunscreen. Because we were also financially disadvantaged, I had to work hard on the fields and take care of the cows. I could only rest when my sunburns became too painful and watery blisters formed. My grandmother then would allow me to go home and do housework or to do my schoolwork. As a child, I was always used to work and even today, I find it difficult to be lazy.
I did all my schooling in regular institutions where in many cases I was the only one with albinism "mzungu" as fellow schoolmates referred to me. My childhood was marked with stigma, discrimination and physical abuse based on being different. My earlier years of schooling were very hard for me to cope with because I was naive about my condition. I was called with humiliating names and even heard offensive remarks from older people. There was no one to defend me.
In the beginning, I hid the fact that I could not see the blackboard. While my classmates were reading and writing, I hid between the tea trees next to the school and read in my schoolbooks. I cried often. Nobody missed me, even my teachers did not. When the school bell rang, I went home.
Sometimes, when I asked a question in the classroom, everyone burst out laughing and the teacher did not pay attention to me. They all thought I was stupid. This behavior adversely hurt my self-esteem at a young age. The students and teachers judged me for my strange appearance before they listened to me and gave me an opportunity to prove myself. Every incident would crash my painfully acquired self-confidence.
While my grandmother fiercely protected me at home, I had no one to protect me in school hence was vulnerable to the jibes of other students who out rightly treated me differently. Many are the times my fellow students pinched me to feel my skin while others would cut me using a razor blade to see whether I would bleed. Until today, I have scars on my legs to show for it. During playtime, none of the children wanted to play with me. Other times I would attend a function or visit a family and the utensils I used would be thrown away afterwards.
When I reached 19, I decided to completely abandon the opinions of others. I tried to win courage because I knew it was the only life I had. I also started being aware of myself and the challenges that came with my condition, this self-awareness led to self-acceptance and eventually to high self-esteem moulding me to be an advocate about my condition. I decided not to pay attention to what other people said about me and slowly filled my empty self with growing self-esteem. I could now share my problems and fears with some friends I had made and could trust. All this together slowly changed my personality to the positive. At around this time, I had also joined college and for the first time in my life, I met other people with albinism. When I listened to their experiences, I realized that my misery was small compared to what others had to go through the common experiences made me realize that we need to saturate the society with factual information about albinism .
My childhood memoirs inspired me to establish Positive Expoosure –Kenya 10 years ago, while the work has been fruitful the Albinism & I innovation is a scale up plan to ensure sustainability and easy replication of the work that we have been doing
I’m a versatile Organizational development & management practitioner. Extensively trained, highly innovative and competent with a deep understanding and hands-on experience on Human rights, disability, gender, diversity & inclusion programming. In the spirit of “Leaving No One Behind “and starting with the furthest behind first. I have a strong background entrenched in designing, developing, planning and implementation of projects. I am also knowledgeable and experienced in developing public outreach initiatives and strong advocacy networks, which targets diverse and underserved communities. High level of performance in relationship building, decision-making and communicating.
My lived experience with albinism allows me to constantly be alive to the realities of disability existence and has influenced my trajectory in life, career and desire to excel. As a person with albinism, a condition that is visibly invisible working to tackle instances of exclusion and being put in the margins of the society is something that comes naturally to me.
My personal goal is to Inspire, Engage & Transform humanit
JANE WAITHERA-TEAM LEAD Positive Exposure-Kenya/Co-creator Climb For Albinism
Ms. Waithera is a fierce & proactive human rights advocate, social entrepreneur, mentor & motivational speaker. She has over 10 years’ experience in disability rights, management, development, leadership, diversity and inclusion particularly on issues of persons with albinism (PWA) a community of high alert in Africa. She uses her unique, larger than life personality to change mindsets on albinism, a rare genetic condition that she was born with.
Waithera is the Executive Director PE-Kenya www.positiveexposure-kenya.org an albinism education and advocacy organization. Through PE-Kenya She promotes inclusive communities that uphold the rights of persons with albinism to empowerment, equality, dignity, justice and self-reliance, through advocacy, public awareness, economic empowerment, education & Mentorship.
Ms Waithera holds a BA in Leadership and Management and is currently Pursuing her Masters of Science in Management & Organization Development at USIU-Africa, additionally she holds relevant certifications and trainings in Human rights, social entrepreneurship & public policy. She is also a recipient of different local and international awards for her continuous work on albinism with a focus on diversity & inclusion through innovative, sustainable and creative ways of raising awareness and reducing the stigma associated with the condition.
Her personal mantra is to Inspire: Engage & Transform The best part of what she does is that she shares her personal life experiences and the journeys she has lived and lessons she has learnt with her audiences. This draws them in and creates an emotional and multi-media rich experience, which leaves the audience both moved and inspired to live their fullest and most meaningful life.