Authors on Friedreich’s Ataxia – Sarah Allen
by Michell Spoden
As part of the Authors on Friedreich’s Ataxia series, I share my correspondence with another author who is part of this literacy project. Today’s guest is Sarah Allen, a 45-year-old English writer living in Spain. She is an Honors graduate in English Literature of the University of Birmingham, PGCE in primary education from Newman College, University of Birmingham. Currently, Sarah is a full-time mother of three.
Michell: Sarah, please let our viewers know about this project and how you decided to join it?
Sarah Allen: I answered a call for writers to contribute to a collaborative novel to raise funds for research into Friedreich’s Ataxia. It sounded very interesting to me – it appealed to my interest in literature, it not only has merit in its own right as a fund-raising project but it has literary merit in what it achieves. It is such a brave and bold undertaking to take writers from all over the world and unite them in one intriguing narrative.
Michell: There is something similar with each of the writers for this project. What is that?
Sarah Allen: 14 of the authors have Friedreich’s Ataxia – a progressive neuro-muscular illness which has no cure – at the moment.
Michell: Your group has decided to translate this book into different languages, please tell us more about that aspect of the project.
Sarah Allen: The aim is to translate into each maternal language of the writers by a team of voluntary translators. At the moment, it is available in Spanish and is being translated into English, in which I am involved. The translation process itself is a huge undertaking. Gian Piero Sommaruga co-ordinates this side of the project brilliantly!
Michell: Do you believe that this project will lead to other extraordinary events in the future?
Sarah Allen: Artistically – I hope so! It certainly has potential. I have no doubt that our primary aim, to raise awareness and funds for research of F.A will be met and exceeded – one day there will be a cure, and that will be an extraordinary event!
Michell: Outside of raising funds for the book for the cause you are currently mediating for, what other humanitarian efforts have those in the group been involved with?
Sarah Allen: I’ve worked voluntarily for the DPN – an organization based in the UK for disabled parents, I helped in the training of social workers with the direct payments scheme in Birmingham and I was a bereavement counsellor for CRUSE in the UK.
Michell: Since all of you struggle with the same disease, what are the greatest challenges with having it. Is there anything that you would like to share with us that could help us to better understand what we outsiders can do to make a difference?
Sarah Allen: On an individual level, I think it’s very important to see the person first and the disability second. We are all so much more than our disability and this novel is a perfect example of that. 14 authors have FA and 3 don’t but from the printed words – you would never know who! One of my greatest challenges is coping with others’ judgments and the discriminations they feed. The frustration of not being able to use public transport for e.g. like able-bodied people, to me, is more dispiriting than living with F.A. Inequality is very hard to bear, especially when the solution is simply architectural.
Michell: What were some of the barriers you ran into during the project? How did you solve the issues?
Sarah Allen: Communication in a group of strangers is daunting and difficult enough but when we don’t have the advantage of seeing the non-verbal communication of someone or even of sharing the same language or culture – communication is extremely challenging.
Michell: Did any of you feel you had learned some major lessons? If so what were they?
Sarah Allen: You never know what’s behind an e-mail or what people are going through outside of the group. As regards communication – I’ve learnt not to be so paranoid and to be more patient when reading and sending messages. I have learnt useful things from Jamie as regards writing and that dogged determination and perseverance lead to success.
Michell: What are some of the individual’s in the group’s favorite authors?
Sarah Allen: My favorite authors are Wilkie Collins, Jeanette Winterson and Oscar Wilde. I like gothic/supernatural writing.
Michell: On behalf of myself and Recovering the Self, we would like to wish you the very best in all of your endeavors.
Read Rebecca Stant’s Interview about international literacy project against Friedreich’s Ataxia.