Ambassador in action, or why representing Alopecia UK rather rocks

Representing Alopecia UK at a fundraiser in 2014
Representing Alopecia UK at a fundraiser in 2014
Talking at the Big Weekend for AUK in 2014
Talking at the Big Weekend for AUK in 2014

Last week I received a new contract – not on a book but with a charity, Alopecia UK, who have asked me to continue as an Ambassador for another year. Taking on this role in 2013 was the start of something hugely rewarding so I’m very, very glad. It’s a small charity founded in 2004 and run by two wonderful women, Jen Chambers and Amy Johnson, whose aim is to help anyone affected by the strange condition that is alopecia. It’s different for everyone, it’s completely unpredictable and many of those who live with it do so privately, even in secret – and with little hope of success from any ‘treatment’. It doesn’t make us ill and when an agent called it a disability I was shocked. But that doesn’t mean it’s easy to experience or manage; it can be deeply challenging to self-esteem and undermine identity. I want to help. But how?

I became an Ambassador because of the power of stories. Before any of my other books I wrote a story about a character with alopecia – which I then kept back, even after I’d had others published, in order to safeguard that secrecy I mentioned. I wrote it partly as therapy but it changed my life because Michael Morpurgo read the manuscript and loved it. It made me an author. But Daisy changed me too; she’s brave, funny, committed and caring, the activist I wanted to be. I made a decision after 28 years of fearful wig-wearing to go bareheaded in the world and it’s been liberating. As individuals we must all manage alopecia in our own ‘best’ ways, safeguarding self-esteem, spirit and dignity. For me, as a happy woman old enough (as I approach sixty this summer) to have grown a thick skin, and as someone who has always believed in the unique light in all of us – independent of our body shape, skin colour, religion, sexuality or gender, qualifications or earning power – it’s a fit. I’m over my own alopecia. 

Stories can feed that spirit or flame within and I was overjoyed to discover that THE WATERHOUSE GIRL had supported readers with alopecia. I was gobsmacked too to hear from a Y8 boy with hair that reading it had helped him to understand how it feels to be different: “You made me a better person.” Last year the sequel came out, with Daisy aged sixteen. So when I’m booked as an author to lead writing workshops I have a true story to share in assembly, with a message much bigger than hair: about identity, diversity, individuality and respect. Usually I’m the only one in the building with alopecia and I can educate my audience, whatever age. They’re spellbound!

Even more special is visiting schools where a student has alopecia. It’s essential of course that I find out exactly how I can help most and approach the opportunity in dialogue with that young person. But it makes a difference. That young person no longer feels alone; peers who have been cruel or thoughtless apologise; everyone finds out more about the condition and what it means, emotionally and practically, and the student concerned has the chance to ‘come out’ and own what may have been a secret, with courage that earns him or her respect. I’m just there to facilitate, with the kudos of an author and experience of public speaking. And then in the writing workshops that follow, I can guide the students as they create a character with a difference (any difference) from the inside. Empathy is the most important quality we all need to learn; it’s imaginative and liberating and it seems that understanding others helps us to accept ourselves. In my experience people with alopecia are defined both by empathy and by their refusal to judge others. And they often find humour helps! Alopecia UK is a community full of great and good people.

 So my bareheaded author visits to school can help with offering support and increasing awareness: two of Alopecia UK’s goals. As an Ambassador I’ve also tried to raise some funds, firstly by dancing for four hours and then by inviting people to decorate my scalp. I also started up a support group in my home town of Berkhamsted. In between, I had an idea watching a quiz show called Eggheads, that awareness could be raised in a near-global way if I could recruit four more women prepared to go on TV without a wig, hat or scarf, and to show that inner light or spirit with big smiles. And, mindful that there would need to be a Z in the month and a wind in the right direction, do their best to win the prize money for the charity. It took eight or nine months to pull a team together and we’ve had a long wait since filming, but the episode – very much worth watching – is scheduled for March 17th, 6:00 on BBC2…

Suzie Barker-Mewis (for Molly B), me, Victoria Petkovic-Short, Marie Jenks, Jeanette Oliver and Emma Skipper. Thank you.
Suzie Barker-Mewis (for Molly B), me, Victoria Petkovic-Short, Marie Jenks, Jeanette Oliver and Emma Skipper. Thank you, team.  Plus CJ, Kevin, Lisa, Judith, Jeremy and Pat.

 

 

Leave a Reply

Your email address will not be published. Required fields are marked *