In September this year alongside some of my closest friends I will be taking part in a charity fundraising event through the Scottish Highlands to raise as much money as I can for the charity Standing Voice. Over the course of one week I will; canoe 60 miles along the Great Glen, cycle 200 miles through remote Scottish mountains and summit seven Highland mountains each over 3,000ft high.

In 2006 I set out to make a film about the lives of those living with Albinism in Tanzania for the BBC. This film has taken me on a journey where by this issue and the lives of those people I have met along the way have had a profound effect on me.

These experiences resulted in me co founding the UK / Tanzanian registered charity Standing Voice that promotes the social inclusion of people with albinism in Tanzania through groundbreaking Health, Education and Advocacy initiatives.

Those with albinism in Tanzania face severe social persecution. Stigmatised because of their appearance, they have historically been seen as ghosts or demons, often interpreted as curses on their communities and cause for eternal filial shame. Many have been abused, dehumanised, and hidden away as a result. Since 2006, 75 people with albinism have been brutally murdered in Tanzania, with 63 more attacked and many left mutilated; this has largely been an effect of witchcraft beliefs about the karmic potency of people with albinism’s limbs, which, thought to generate wealth and fortune, occupy the centre of a lucrative criminal trade. With scant educational infrastructure to clarify the scientific origins of albinism, myths like these continue to proliferate, placing people with albinism at greater threat than ever. The Tanzanian government has dealt with the attacks by rounding up hundreds of people with albinism—mostly children—and segregating them, placing them in overcrowded protectorate camps where conditions are typically dire.

Born as one of the 16,477 Tanzanians with albinism, your destiny is therefore largely set: susceptible to ultraviolet radiation from the scorching African sun, your chance of escaping skin cancer to reach even 40 years of age sits at a harrowing 2%. Healthcare is sporadic, rarely targeting your needs; and if you are lucky enough to go to school, the overwhelming likelihood is that your condition will be overlooked, your visual requirements categorically failed by conventional classroom learning. Grossly inadequate educational provision will in turn mean chronic unemployment, and you—a person like any other—will suddenly fall victim to a structural cycle of violence, an interconnected picture in which neglect, ignorance and ostracism coalesce to place you among the poorest and most vulnerable on Earth. With ineffective education, poor access to healthcare, and the ever-present threat of physical violence, your prospects recede. Your hope dwindles.

Standing Voice’s Intervention

The situation in Tanzania therefore requires holistic intervention. In response to a problem so sprawling and decentralised, marked by a mass of interconnected failings, we need comprehensive, socially integrated solutions in which health, education, and advocacy initiatives all have a role to play.

By partnering with local stakeholders to deliver targeted, regular healthcare and education to people with albinism, Standing Voice are providing sustainable services that the Tanzanian state can eventually absorb and operate alone. Between these programmes and our advocacy work, we advance the ability of those with albinism in Tanzania to reintegrate safely and sustainably, to define themselves as more than mere victims of their condition, and to step out of the shadows, claiming a stake and a voice in a society from which so many of them are currently excluded.

How you will make a difference

£800 will send an abandoned child with albinism to a high achieving boarding school to access an exceptional and safe secondary education for one year

£560 is the cost of one liquid nitrogen tank required for life-saving preventative skin cancer treatment for hundreds

£150 will professionally train an optometrist to meet the complex vision needs of children with albinism in school

£65 will pay for a dermatologist for one day in a skin cancer clinic

£20 provides visual aids kit for a child with albinism so they are able to study effectively at school

£5 provides a 4 month supply of locally produced sun-screen to protect a person with albinism against skin cancer

Over the last 2 years Standing Voice has grown from a small NGO of a few volunteers to the leading UK charity working with people with albinism in Africa. The global response to the film and the charity have been extraordinary and we've raised a overwhelming amount of funds for our life saving projects on the ground in Tanzania. We have brought together a team of wonderfully committed implementers, advocates, volunteers and charity experts who work tirelessly to enable our programmes. We're incredibly proud of the life saving and empowering projects that we've built, but there is still so much more to do!

Some key Standing Voice achievements to date:

• Our Skin cancer prevention and treatment programme operates 22 skin cancer clinics across 6 regions of Tanzania regularly treating over 2500 beneficiaries for skin cancer every 4 months.

• Incidences of Skin Cancer at our clinic sites have dropped by 85.7% since the programme started in 2013

• Prior to the establishment of the Standing Voice Skin Cancer Prevention and Treatment Programme the fortunate few receiving skin cancer treatment faced an average waiting time of 14-17 months; Standing Voice’s clinics have created broader and quicker access, with patients now waiting a maximum of 4 months

• 647 students with albinism are enrolled in the Standing Voice Low Vision Programme

• 2145 low vision devices have been distributed to adults and children with albinism through our Low vision programme

• Our Health services currently reach 15.1% of all people with albinism in Tanzania.

• We have just completed the building of a state of the art Community Training Centre in Tanzania. The centre will act as hub of integration and learning for over 640 people with albinism living in the Lake zone of Tanzania.

• Alongside UNICEF Standing Voice fund the production of a Tanzanian made sunscreen; Kilisun

• Kilimanjaro Sunscreen is distributed to 1869 people with albinism across 11 regions of Tanzania every 4 months and is on its way to being absorbed by the Tanzanian Ministry of Health

• 9,268 bottles of Kilisun sunscreen were produced and distributed during 2014 and 2015

I'm doing this challenge and trying to raise as much money as I can because I believe we can change the lives of people living with albinism in Tanzania who face these extreme human rights abuses on a daily basis. We can contribute to ensuring these people can live with dignity and respect. Having travelled extensively for the last 10 years in Tanzania, one of the least developed countries in the world, I’ve witnessed how hard life is for most, however those living with albinism so often suffer further as they face unimaginable social isolation and the daily threat of extreme violence.

At the toughest moments in Scotland I will focus my mind on the suffering of these people and try and imagine how hard their daily lives are in struggling with disability, skin cancer, abandonment and severe ostracism. I will especially focus on the plight of the children abandoned by their own parents. Please just dwell on that notion for a moment: ……the psychological impact of being abandoned by your own parents…….!

I really need your help in supporting me so that I can raise as much money as possible for Standing Voice (Please note that I am personally fully covering all the costs of journey across Scotland so 100% of whatever you might choose to donate goes straight to the charity).

Please donate as much as you can.

More about Standing Voice

Standing Voice promotes social inclusion and works to stop human rights violations against marginalised groups. We exist to give the disempowered vital tools and platforms to speak back to their society and reassert their presence and equality. We strive to nurture people’s understanding of others so that in the future these marginalised groups will be embraced by society. And in the meantime, we provide the essential basic needs they have been unrightfully denied. 

Ukerewe VoicesStanding Voice Programmes
Skin Cancer Prevention and Treatment
Education Fund
Emergency Development Projects
Creating Community Centres
Outreach, Advocacy, Education
Low Vision