One of the many benefits of self-publishing is the freedom to do what you damn well like with your book, without pressure from a publisher driven by considerations of what is profitable or palatable.
I am constantly inspired by what self-publishing allows brave authors to do, and not only in the cause of literary innovation, as in the case of Dan Holloway, featured on this blog last week. Such freedom also includes the option to publish books that campaign and/or fundraise openly for causes, whether medical, charitable, political or social.
Personally, I’m pleased to have been able to use my own handbook, Sell Your Books!, to raise funds and awareness for the diabetes research charity, JDRF, even though its content has nothing to do with diabetes. I was able simply to add some blurb to the book and to direct a percentage of the profits to the charity’s funds. At first this seemed like a token gesture to me, until, hand-selling one of the first copies, I was implored by the buyer to keep the change from a tenner and put it in the pot for JDRF. It was an empowering moment.
Now that I’m trying to plan a campaigning e-book specifically about Type 1 Diabetes, I’m eager to learn from other authors who are successfully using the self-publishing route to further their own chosen medical cause. The authors listed below use a variety of genres, from memoir to self-help to thriller, to support medical causes:
- Keily Adey’s The Gift of Life helps people deal with infertility issues
- Althea Hayton’s Womb Twin Survivor counsels the remaining twin
- James Minter’s spoof thriller The Unexpected Consequences of Iron Overload is in aid of the Haemochromotosis Society
- Rick Redner’s fabulously titled I Left My Prostate in San Francisco helps couples deal with the diagnosis and treatment of prostate cancer
- Kat Ward’s A Life on the Toilet pulls no punches sharing the experience of bowel cancer
Introducing Judith Barrow
But the very first book of this kind that I encountered was by the novelist and writing tutor Judith Barrow. Introduced to me by a mutual online friend, Judith quietly, gently, and with great dignity, whittled away to catch my interest in Silent Trauma, the book she’d written to draw attention to an extraordinary and shocking cause: justice for the victims of the drug DES, a drug that has devastated the lives of generations of men and women with impunity. She’d self-published the book, sandwiched between having her other two novels published by a small independent firm, Honno Welsh Women’s Press. Having read Silent Trauma over the Easter holidays, almost in one sitting, and reviewing it here, I was delighted when Judith agreed to share on my blog what she has learned from her experience.
Q) Welcome, Judith! For the benefit of those who haven’t yet discovered Silent Trauma, could you please briefly describe the novel and the cause for which you wrote it.
A) Silent Trauma is the story of four women living in different parts of the UK but drawn together in friendship because of the consequences of Stilboestrol (Diethylstilboestrol in the USA). The story opens in 1989 when eighteen year-old Lisa Matthews is diagnosed as having clear cell adenocarcinoma of the cervix. The treatment is a radical hysterectomy. Unable to face that prospect, she commits suicide. After the death of her daughter, Meg Matthews spends years investigating the drug. But it isn’t until 2001 that Meg tells Lisa’s story to the local radio station.
Exposed to the drug in utero and having suffered a fourth miscarriage, Rachel Conway hears the interview and contacts Meg. Rachel then confides in her friend, Jackie Duffy, who is shocked. She herself has been affected by Stilboestrol, has suffered with endometriosis since puberty and has never told anyone. Jackie has a destructive relationship with her mother Mary, who refuses to accept that the drug she took caused the problems. Her rejection of Jackie stems from her guilt and her homophobic revulsion of Jackie’s gay relationship with Hazel, an older possessive woman.
Rachel discovers that her husband, Stephen, has been having an affair andthat his lover has given birth to a son. Two months after he leaves her, she realises she is pregnant again. This time she carries the child, a girl, to term.
Like Meg’s daughter Lisa, Avril Breen, a writer, developed cancer in her late teens. She underwent a hysterectomy and vaginectomy after which her fiancé called off their wedding. Unwilling to form another close relationship, Avril isolated herself in a cottage in the Pennines. She hears about Meg’s interview through relatives in Wales and contacts her, consequently becoming friends with Rachel and Jackie.
As the friendships grow, we follow the women’s lives and their determination to make public the devastating results of the drug. Avril persuades them to collaborate in writing a play about it. The story ends as the curtain rises.
In 1938, DES (Stilboestrol/ Diethylstilboestrol) was created by Charles Dodds. It was expected that his synthetic oestrogen would help prevent miscarriages. At the time it was not known how dangerous this drug would be to developing foetuses. Years later, he raised concerns about DES but, by then, very few in the medical field were listening. In the early 1970s, cases of a rare vaginal/cervical cancer were being diagnosed in young women.
Now researchers are investigating whether DES health issues are extending into the next generation, the so-called DES Grandchildren. As study results come in, there is growing evidence that this group has been adversely impacted by a drug prescribed to their grandmothers.
The mission of DES Action groups worldwide is to identify, educate, support and advocate for DES-exposed individuals as well as to educate healthcare professionals.
Q) Why did you decide to write a novel rather non-fiction?
A) I wanted to reach as many people as possible, so I knew I needed to make the story as enthralling and as interesting as I could without it being completely didactic.
Q) Do you have a personal connection with the cause?
A) I have been loosely connected with DES Action UK & USA since I heard a piece about it on the radio and realized a relative of mine was affected by the drug. The damage it causes is very personal and, as private person, she didn’t want anyone to know, so I contacted them on her behalf. To cut a long story short I wrote an article for the UK based DES Action. Many women contacted me after that and I heard some heart-breaking accounts of their lives. In an attempt to reach more people I wrote a short story which eventually resulted in my e-book, Silent Trauma.
Q) How are you promoting the book?
A) I’m taking the book around with me at all the events I still have for Pattern of Shadows and will continue to do so with the talks and book signings I have for Changing Patterns. I also promote on Twitter and Facebook. I’ve promised myself I will do the same with Goodreads and I’m always intending to blog but, between that, writing and tutoring creative writing I run out of time. Oh, and my husband likes me to come out of my study every now and then!
Q) Is your main target people who do know about DES and have been affected by it, or people who know nothing about it?
A) Everybody and anybody who will listen.
Q) The issues are heartrending – how tough was the book to research and write?
A) It was a difficult book to write and I found myself going through a whole gamut of emotions from day to day. I have to say it took over my life. Before it was published, I sent the manuscript to Fran Howell, Executive Director of DES Action USA, and a few other DES Daughters I’d been in touch with, and I asked them to tell me whether there was anything in it that was either incorrect or in appropriate. Fortunately there was little I needed to alter.
Q) What response have you had from those affected by DES, and what response from those who knew nothing about it?
A) Many of the DES Daughters who have read it have contacted me to say they can empathise with the women in Silent Trauma. And they know that a percentage of the sales are going to the charity so a lot of them are trying to spread the word about the book. I am constantly made aware of the lack of knowledge of Stilboestrol in this country. Whenever I begin to talk about the drug most people assume I am talking about Thalidomide. When I explain about the damage the drug has caused the response is almost always amazement and disgust that consecutive UK Government have been reluctant to help – or, I’m afraid, acknowledge, that the consequences of Stilboestrol continues.
Q) This book is a departure from your other novels, Pattern of Shadows and the new Changing Patterns. How difficult was it to adapt your writing to this purpose?
A) Once I’d collated as much research as possible, I knew I needed to try to write the story in my own way; to make the characters as rounded as possible. But I was also aware that, unlike the characters in my other books, it was the story of the drug, rather than the characters themselves that led the way. I would have liked to give them more of a back-story, but I think they came alive in their own way in the end. I was also lucky to be given permission from the newspaper to use an article they had written about two DES Daughters in the UK as a Foreword. By combining that and the quotes at the beginning of the chapters with the fictional story I hope I have achieved what I set out to do: to bring the information about the drug to the reader and to give them a good story.
Q) Will the experience of writing it affect your work in future, or are you able to it away from your other work?
A) I think, if anything, it has helped me to be a better writer, to dig deeper into my emotions. But, once it was out, I tried to concentrate on marketing it like any other book. If anything, the years of research I did made me recognise the courage of so many of these women who just get on with their lives. It took me a little while but now, yes, I can compartmentalise it now, away from my other writing.
Q) What’s the latest news on the DES campaign? Please provide a link for anyone who is moved to donate to the campaign.
A) Unfortunately DES Action UK folded last year due to lack of funds and support, but DES Action USA promise to help and advice anyone who contacts them. They have a website: www.desaction.org. The charity also has a newsletter, Voice, to which anyone interested can subscribe. And there is also a wonderful DES Daughter in the UK who has a website here – which is constantly updated with the latest news. She also has a Facebook page which can be found by just typing in DES daughter.
In America there has been a huge campaign to prove that some DES daughters who developed breast cancer did so because their mothers were prescribed Stilboestrol (Diethylstilboestrol in the USA). The first DES breast cancer trial was settled out of court by the drug company after the opening arguments. The company did not have to admit guilt for making and promoting DES as an anti-miscarriage drug that causes breast cancer, and the DES Daughters, who accepted the settlement, cannot disclose the amount. But there are many other DES breast cancer lawsuits already filed and waiting in the wings. So, even though there was no actual guilty verdict against the drug company, there is still a feeling of satisfaction in the DES community.
Q) What would your advice be to other writers who might be wondering how to help support their favourite cause by writing and self-publishing a book?
A) Do it. But also make sure you’ve done your research. I heard some heart-breaking accounts of the lives of the women affected by Stilboestrol, and I was always aware that I was representing them, so I needed to know all my facts were correct.
Q) Although self-publishing gives one much greater freedom to produce a book that a commercial publisher might shy away from, did you ever seek a traditional publisher for this, and if so, what was the outcome?
A) I did approach my own publishers and four others. The reasons for the rejections were twofold. One was that “they wouldn’t be able to sell ‘issue–led’ novels”. And two, I was told, was the worry of being sued by the drug companies. To my mind, if any of them decided to sue, they would be accepting culpability. But just in case any of them are reading this, the house is in my husband’s name only and I have no assets. By the way, my publishers, Honno, have said that they may, in the future, take Silent Trauma on.
Q) Gosh, I hadn’t even thought about legal issues. I really admire your stance. The book’s currently available as an e-book only – do you have any plans for a print book, or would the cost be prohibitive?
A) I have actually bought some printed copies through Create Space. The cost wasn’t too exorbitant so there is a small profit margin. I don’t receive royalties for the ones I buy, but I’m keeping a record of that so altogether I’m hoping I’ll be able to send DES Action a decent amount.
Q) Do you have plans for any further books of this kind?
A) I have been approached to write a book in the same way about DES Sons. Again it would take a lot of research. It’s something to think long and hard about. But I have almost completed a novella that I’m hoping Honno will take on, so must finish that before I start anything else. Also the next few months will be taken up with events to promote Changing Patterns.
Thank you so much, Judith, for that insight into how you have combined your skill and experience as a writer with the freedom that self-publishing offers to raise awareness of DES Action. And good luck with your new book, Changing Patterns, launching this month and currently the Welsh Book Council’s Book of the Month for May – congratulations!
Here are links to Judith’s author website, to her Twitter page and to all three of the books she’s published to date: