SABINE ZETTELER

- Standing Voice Trustee -

By Standing Voice

July 25^th, 2018

Founder of eponymous communications agency Zetteler and a long-term trustee of Standing Voice, Sabine Zetteler has always been a storyteller. After joining the Board of Trustees in 2014, her knack for publicity—her particular aptitude for listening, and amplifying the voices of others—has taken our charity from strength to strength. Following her most recent visit to Tanzania in June 2018, Sabine sat down with us in London to reflect on her growing immersion in the plight of people with albinism in Africa.

I first met Harry Freeland, the founder of Standing Voice, at university. We kept in touch after graduating, albeit distantly, but reconnected properly when he released In the Shadow of the Sun, the 2012 BBC documentary that exposed the challenges facing people with albinism in Africa to the world. Like so many, I was captivated and devastated by that film. I knew I wanted to get involved or support in some way, but didn’t know how. Shortly after, Harry founded Standing Voice, and reached out to ask if I’d be a trustee. I was apprehensive initially, unsure that my public relations skillset would transfer convincingly to trusteeship of a very important charity confronting a very serious social problem. But Harry knew about my history of volunteering, my passion for social justice, and my hunger for telling stories: he saw a compatibility I was perhaps too nervous to see, and I’m so glad he did.

Looking back, volunteering has always been an enormous part of my life. As a child, I spent a few Christmas Days volunteering with my mum and sister to help elderly people experiencing isolation at a local nursing home. I’d whine all the way to the door, of course; when you’re young, you don’t want to stop watching TV and get out of your pyjamas to go and help strangers on Christmas Day. But as soon as you walk inside, you see how welcomed you are, and how helpful you can be. All you do is wash dishes, or hand out presents, but you get this wave of gratitude in return. You hear so many stories: some really sad, most really funny.

Since I was 19, I’ve spent many evenings and weekends volunteering for various homeless shelters wherever I've lived across the world. For the last decade, I've spent every winter volunteering with the Hackney Winter Night Shelter, which gives hot food and accommodation to homeless guests in the coldest months of the year. Most of the Zetteler team volunteers on Sundays at Restoration Station, a charity in Shoreditch using creative work and furniture revival to facilitate recovery from addiction.

People always plan to do these sorts of things when they retire. But none of us have the luxury of knowing how long we will be in a fit state to help. I choose to volunteer now, when I’m of able body and mind. Life is busy, and I never think I have time; but, if I try hard enough, I know I can make time. Like my mum always said, true generosity is always inconvenient.

I think that history of giving my time—that determination to be useful—has bled through into my work with Standing Voice. When I accepted the position of trustee, I knew we had our work cut out: albinism is such a niche issue I initially wondered how on earth Standing Voice would ever make enough money to make enough people care about an issue that’s thousands of miles away and can feel like it belongs to another world. I know how difficult it is to raise money for homeless people in Hackney, from people living in Hackney! It’s hard to get people to wake up to issues on their own doorstep. How can we inspire empathy and generosity for people whose plight can feel so remote and confusing, so horrific it becomes alien and opaque, beyond explanation?

My first trip to Tanzania with Standing Voice was in November 2017. On a whirlwind tour through the charity’s health services, I saw the Skin Cancer Prevention and Vision Programmes in action, as I visited major clinics in Mwanza, serving hundreds of patients with albinism. It was sobering to see how severe the medical implications of albinism can be in an African setting, particularly with respect to UV radiation and skin cancer; more than that, though, I was stunned, and humbled, to see how powerfully the charity is addressing those crises.

This summer, I returned to Tanzania to visit Ukerewe Island: the birthplace of Standing Voice and the home of its Umoja Training Centre, where people with albinism and their peers benefit from integrated learning and skills development opportunities. Half the Zetteler team and a range of our clients jumped aboard for this trip, as we set about refurbishing the community centre with bespoke renovations and designs before watching as the Summer Skills Workshop hit full flow: a jam-packed week I’m only beginning to digest.

Arriving on Ukerewe Island and seeing the training centre for the first time overwhelmed me. It is one of the most beautiful buildings I have ever seen: the lines, the hues, the landscape, the depth of care and affection etched into every part of that building. I knew it was gorgeous because I’d seen pictures, but it’s hard to feel a picture, to believe it. I don’t know what I expected, but so much of what I knew about Ukerewe was couched in a media-fired language of misery and suffering. I didn’t anticipate the beauty or the joy: the place itself is bordering on paradise, and the people are so welcoming. You realise it’s a community of human beings over there, not a pile of statistics. In a way, that was the premise of the Summer Skills Workshop: people weren’t coming in as victims, or sufferers of visual impairment, or potential skin cancer patients. They came to learn and develop as part of one community, including their peers without albinism.

One of the most emotionally charged moments came when I met Paschal. As one of the charity’s earliest beneficiaries, Paschal endured a lifetime of abuse and trauma before he was rehoused in a building that neighbours the Umoja Training Centre. He didn’t know me, and we spoke not a word of common language, but Paschal would grip my hand so proudly, really tight, and march with a real sense of pride when we were together. For someone who’s been rejected by everybody forever, the value of touch is incalculable. It reminded me of volunteering at Crisis at Christmas, where many people cry if you wash their hair. It’s so intimate, sometimes no one has touched them for years – people think they’re vermin. When you’re spoilt with touch, you don’t notice the importance of it, but it’s such a relief to be treated as an equal in that way. I felt that really intensely when I first held Paschal’s hand. I think he’s been such an alien for so much of his life that to be treated normally, and without suspicion, took his breath away.

As the week continued and the workshops began, Paschal’s story became one among hundreds. You could see how empowered people felt to be learning new skills: apprehension and nervousness suddenly replaced by curiosity, camaraderie, and self-belief.

This trip has brought my whole team and I even closer to Standing Voice, and helped the people around us to understand why the charity is so important. I’ve seen first-hand how the whole organisation works: the fluidity between the UK and Tanzanian teams, a bond almost like family. It’s so clear to me now why the charity champions its beneficiaries in such a considered way. They don’t write their features to encourage pity. It’s all about placing people with albinism at the centre of their own story: not diminishing struggles or ignoring trauma, but helping human brings to rewrite their histories from a place of community and humanity, moving beyond pity and fear into a space of dignity and hope.