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#CelebratingWomenWithAlbinism Videos

Celebrating Jayne Waithera (Kenya)

Co-founder and Programme Director of Positive Exposure Kenya and Climb for Albinism Activist 

This video is part of #CelebratingWomenWithAlbinism, a campaign by the Disability Rights Unit at the Centre for Human Rights, University of Pretoria. 

The campaign aims to celebrate the achievements and to highlight the stories and experiences of women with albinism.The campaign was launched in 2018 on International Albinism Awareness Day on 13 June. 

Jayne's story 

I was born in Kenya into a “normal” African family, as a person with albinism I experienced more than my fair share of challenges. I knew I was different because of the way the society treated me; even from the stares. I knew I was different in a bad way; it’s not that kind of difference that is to be celebrated. My mother abandoned me, leaving me with my grandmother because of the stigma attached to my condition.

In school fellow students would cut me with blades to see if I bled. I struggled with a lot of things especially when it came to reading and writing. I was punished every other day because of my visual impairment which meant that I struggled to see my assignments and class work. When I was 12/13 I She was also taught to move closer to the board whenever she had difficulties reading. I was also taught to the simple technique of moving closer to the board whenever I had difficulties reading.

My childhood was filled with discrimination and stigma and I remember my childhood experience more than any other experience I had to go through as a grown up. In the midst of all this cruelty; my grandmother was my pillar of strength. Her unwavering support and love cannot be ignored.

Today, I run two initiatives on albinism. The first is Positive Exposure which focuses on education and advocacy through photography and art to change the narrative on persons with albinism. My second initiative is the Climb for Albinism. Climb for Albinism works with women across Africa for positive impact. In September, six women with albinism will be climbing Mount Kilimanjaro to demonstrate the strength and resilience of women with albinism. Kilimanjaro is the highest point in Africa; our voices will be heard as no voice from the roof top can be ignored. I firmly believe that the voices of women with albinism have been missing and it is time to begin an engendered discussion on albinism.

Persons with albinism are the most visible group of persons with disabilities, but issues about our rights are not being addressed. We are visibly rendered invisible. The absence of melanin and the visual impairments affecting people with albinism are disabling in and of themselves. I am limited to what I can do indoors. I can apply sunscreen, but the sunscreen does not render me immune against skin cancer. Corrective glasses, help where they can; but my vision will never be 100%. Mere tolerance is not enough .The world must begin to accept, embrace and celebrate diversity.

We must all adopt a vision that challenges us to ‘change how we see, and see how we change’.

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