A Guest Blog Post from Daisy Kirkwood
Albinism: a genetic condition where people are born without the usual colour pigment in their bodies. People with albinism aren’t able to create normal levels of melanin, the chemical that is responsible for eye, skin and hair colour. As a result, people with albinism have very pale skin, hair and eyes.
Kukwera (Chichewa translation): Ascend
I met James Aris ten years ago, when we were seated next to each other in our Physics class at Tewkesbury Technology College. Part of me feels that it was a tactical move, for James, a wildcard, to be seated next to myself, a self-confessed ‘nerd’, with the hope that I might prove impressionable. Whatever the reason may be, it worked and here we are ten years later, to talk about Kukwera Albinism, a project that we’re working on together.
James originally worked as a fundraising director for a large UK based organisation, before leaving to travel and teach in Asia and shortly after Christmas 2015, he announced that he had booked a one way ticket to Africa. This was not a surprise to me, James loves to travel and jealous though I was, I wished him well on his journey. Neither of us suspected that James’ African adventure would prove to be as eye opening as it became.
I spoke to James about a month after he left for Africa. He had travelled via motorbike from Kenya through Tanzania and Mozambique and had planned to continue through Malawi onto Zambia, Zimbabwe, Botswana and eventually South Africa. However, whilst in Malawi, James decided to take his motorbike to a mountain. Whilst travelling there, James met a boy called Harrison Mkoshoni, who has albinism. Harrison was a twin, however, one night his brother was abducted from their bed, whilst Harrison was attacked. Sadly, Harrison and his family found his brother butchered to death, his head by the river. James listened to Harrison and his family and decided to take action using his experience in the fundraising sector. At that point, James decided to set up Aris Fundraising, the company that spearheads Kukwera Albinism.
Malawi is currently in the midst of an unprecedented human rights crisis. Men, women and children with albinism are ritually hunted and slaughtered, their body parts sold to local witch doctors. Due to traditional beliefs, those with albinism are seen as a ‘curse’ and therefore it is not seen as a sin to kill them. Since November 2014, Malawi has seen a sharp increase in abuse against people with albinism. At least eighteen people have been killed and five have been abducted with no leads to their rescue. The Association of People with Albinism Malawi (APAM) estimates there to be between seven to ten thousand people with albinism living in Malawi, which is why something needs to be done to educate communities, as well as provide support for people with albinism. The health complications of albinism include skin disorders such as skin cancer, which is made worse by the high levels of direct sunlight in Malawi. The segregation of those living with albinism means that it’s incredibly difficult for them to seek and receive medical treatment.
Whilst in Africa, James made links to the Association For Persons With Albinism Malawi, through which he met Eddah. Eddah lives in Blantyre and originally volunteered for APAM whilst working full time elsewhere. Eddah met a man called Alfred, a gentleman with albinism who was attacked with machetes and only survived thanks to the quick thinking of his grandmother. At that point Eddah became dedicated to working to highlight the discrimination against albinism in Malawi and turned down a multinational job offer in order to stay and educate communities. Eddah joined the team earlier this year and as I type, she is heading up our Malawian office, providing ground support.
James, Eddah and I see Kukwera Albinism as providing one clear vision. We want to transform Malawi into the heart of Africa, where persons with albinism can live without fear of discrimination. We want to provide education, health care and support services that prevent someone with albinism from developing life threatening health issues. Most importantly, our vision is to provide education for communities that dispels the negative stereotypes and discrimination.
This is our big picture: Aris Fundraising and Kukwera Albinism plan to host twenty eight festivals, in all twenty eight districts of Malawi. Each festival will be joined be a local University Dean, a dermatologist with a mobile treatment clinic, a nurse, administrators and two project organisers. In addition to this, we will compile a database of people with albinism for use by the Malawian Government, to enable those with albinism to access support from their local police forces. Recently, two festivals were held in the Palombi district of the Southern region with huge success. In total just over three and a half thousand people attended, twenty six of them being persons with albinism. The set-up of the festivals include traditional dancers & live performances from local hip hop and soul singers, as well as local chiefs & MP’s. Local teachers and doctors came on board to both treat the persons with albinism, whilst teaching the importance of education and inclusion to the crowd. In order to keep providing these festivals, we need to raise one hundred thousand pounds.
So, whilst James is fundraising around the UK and Eddah is on the ground in Malawi, I am here to promote awareness of our cause through the means of social media. Like you, I am a fellow Maman. I’m sat in my living room, watching my child throw himself from the armchair to the sofa, all to the tune of his Cbeebies favourite, Swashbuckle. When I lock my doors tonight, it’ll be out of habit. I don’t need to worry that someone will take my son in the middle of the night, hurt him and try to sell his body parts. Somewhere in Malawi tonight, a mother will lock her door, fearing just that.
We’re not asking for donations directly, although, if you would like to donate please visit www.kukweraalbinism.org. What I’m asking from you, today, is to share. Share our cause on Facebook, share it on Instagram, and share it on Twitter. The more we can promote Kukwera Albinism, the better chance we have at succeeding. From one Maman to another, thank you for taking the time to read this piece. I hope by writing it, one day, our Malawian Mamans will share our peace of mind.
Follow us on Twitter: Kukwera Albinism
Follow us on Facebook: Aris Fundraising Ltd
And visit our website: www.kukweraalbinism.org