Authors on Friedreich’s Ataxia – Rebecca Stant
In the second round of Authors on Friedreich’s Ataxia, I present my Q&A with Rebecca Stant, a 42-year-old Australian author, who is part of the international literacy project against Friedreich’s Ataxia.
Michell: Rebecca, please let our viewers know about your recent project and how you decided to join it?
Rebecca: The project was started by Maria Blasco Gamarra, who deserves praise for initiating such an unusual and unique project. It is a collaborative effort from many writers around the world who have joined forces to raise money to find a cure for Friedreich’s Ataxia (FA). To me, the project provides a positive, creative, and entertaining way for those affected by FA to actively contribute towards a cure for this relentless disease.
Michell: There is something similar with each of the writers for this project. What is that?
Rebecca: All of the writers are either FA sufferers themselves or are closely involved with finding a cure. FA is a rare neuromuscular condition affecting balance, coordination, speech, hearing, everything really. It is fatal. There is not any cure yet, but there are hopes of therapeutic drugs and/or stem cell technologies treating the disease. This all costs money, and this is what any funds raised by the book sales will go toward FA.
Michell: Your group has decided to translate this book into different languages, please tell us more about that aspect of the project.
Rebecca: The translators have all done the project an invaluable service. Their efforts are crucial in allowing the book to be read in multiple languages.
Michell: Do you believe that this project will lead to other extraordinary events in the future?
Rebecca: I hope so. I’d like to see more collaborative projects from those whose voices aren’t heard often and who may have difficulty producing enough writing for a book.
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 and why?
Rebecca: I support many environmental campaigns run by Greenpeace, donate to Red Cross projects when I can, and particularly watch how the cost-cutting government in Australia disadvantages people with disabilities further by systematically refusing to spend money on funding/health/access/education etc.
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?
Rebecca: Please take time to notice people who may not conform to ‘normality’. Smile. Show compassion and patience. Share a joke, communicate, and try to understand that if they don’t communicate back, it may be because they cannot, not that they will not.
Michell: What were some of the barriers you ran into during your project? How did you solve the issues?
Rebecca: Physical barriers – an uncoordinated person may find typing slower and may find that their stamina and energy levels make the extra work involved a challenge. Communication occurred primarily on Facebook and email, and often involved using online translation services.
Michell: Did any of you feel you had learned some major lessons? If so, what were they?
Rebecca: Talent is unique; creativity and determination is priceless.
Michell: What are some of the favorite authors of the individuals in the group?
Rebecca: Angela Carter, James Joyce, Henry James, Peter Carey, Thomas Pynchon…
Michell: On behalf of myself and Recovering the Self, we would like to wish you the very best in all of your endeavors.
Read Jamie Leigh Hansen’s Interview about international literacy project against Friedreich’s Ataxia.