Saturday, 12 January 2019

Rosie Loves Jack by Mel Darbon. Questions on Writing a Book With a Protagonist With Down's Syndrome.

           Rosie Loves Jack by Mel Darbon. Questions on Writing a Book With a Protagonist with Down's Syndrome.


For my fourth blog I have decided to re-post the questions that I have frequently been asked by readers, schools, bloggers and organisations about my debut novel, Rosie Loves Jack, which is the first Young Adult book to be written through the voice of a teenage girl with Down’s syndrome. Many people still ask me these questions - so here we go!
‘Rosie Loves Jack. Jack loves Rosie. So when they’re separated Rosie will do anything to 
find the boy who makes the sun shine in her head.
Even run away from home.
Even struggle across London and travel to Brighton, though the trains are cancelled and the 
snow is falling.
Even though people might think a girl like Rosie could never survive on her own.
        “They can’t send you away. What will we do? We need us. I stop your angry, Jack. And you make me strong. You make me Rosie.”
1.    This is your debut novel, why did you decide you wanted to write a book?

I’ve written stories ever since I can remember. When I was at Primary School, we made our own storybooks, which we decorated on the front. I loved this more than anything and would have spent all day writing in them. Writing a book was something I hadto do and I’ve never felt any differently – it’s just taken me much longer to achieve than I would have liked, but life has a habit of getting in the way! Five years ago my three children told me to get on with it, as I wasn’t getting any younger… I applied for the MA Writing for Young People at Bath Spa and got on the course. It gave me the space and motivation to write my book – one that I had kept inside me for many years, inspired by my brother who has severe autism; someone who I so desperately wanted to give a voice to, alongside the inspiring teenagers with Down’s syndrome who I worked with a few years back. 

2.     Part of the book is set in a specialist unit of a mainstream college. What was the process of research you undertook for this section? 
The specialist unit of the mainstream college in Rosie Loves Jack is based on a unit called Pathways, which is part of Henley College in Henley-on-Thames in Oxfordshire. It is a sixth form college, which offers a curriculum that accommodates the needs of students with learning difficulties and disabilities. They are offered a varied timetable within the framework of a sixth-form college and are encouraged to become as independent as possible. Some of the students will study for Entry Level qualifications in English, Maths and ICT. 
            I worked as a Teaching Assistant at this college for just under two years back in 2006, working within Pathways with a group of students who had various learning disabilities. Amongst these pupils were four teenagers with Down’s syndrome, including a girl called Rosie, who sowed the seed for my character Rosie in Rosie Loves Jack. I loved the fact that these students were very much seen as part of the main college and encouraged to mix at lunch times and for extracurricular activities. One of my student’s favourite pastimes was playing pool with the lads on enrichment afternoons.
To investigate the current situation at the college I contacted the Acting Programme leader who filled me in on the increasing variety of activities on the Pathways programme. 

3.    And why did you decide to make it a romance - and since one half of the couple is absent for most of the novel, did that make it harder to develop their relationship for the reader?

I wanted to write a love story that demonstrated how my character, Rosie, is a teenage girl first and not just a person defined by her Down’s syndrome. It was very important to me to write a story that showed we all have these same aspirations; to love, be loved and to be accepted without limitations, because human emotions don’t discriminate between those who are able or those who are disabled.
I wanted to make it a romance because it’s a universal situation we can all relate to – especially for teenagers and young adults, as it’s quite often the time that you first fall in love or dream of falling in love. We can all remember the agonies and ecstasies that we went through or hope that one day we will know that sort of love that we’ve seen in films or read about in books. It’s a time when the person who can make you the happiest can bring you the most pain. It’s the first time you become truly comfortable with someone. If you lose it, as Rosie thinks she has at the beginning of the book, you question your own self-worth, feel devastated and can’t imagine not being with that person. Rosie feels just this. When she discovers Jack is just as miserable as her, she knows she has to be with him. 
It actually didn’t make it harder to develop their relationship for the reader because I knew Jack as well as I did Rosie right from the start and Rosie carries Jack with her, inside her head and her heart throughout her journey. It’s what keeps her pushing on to find him, no matter what gets thrown her way to stop her. She constantly refers to him and his postcards that she carries, so he is present even if he isn’t physically there. She has flash backs which show how they met and how their relationship developed, all written in a heightened, lyrical voice, which is how Rosie ‘speaks’ in her head. These scenes help the reader to feel close to Jack, especially since they quite often highlight Rosie and Jack’s most romantic moments together and draw us into their relationship and explain their deep love for each other and why they need to be together. 

4.     Your first-person narrator is someone who has Down’s syndrome. What influence does this have on the creation of the narrative? Did it pose any particular challenges? Were there any positive factors associated? 
Yes, there were challenges that presented themselves. I wanted to write a love story that demonstrated how my character Rosie is a teenage girl first and not just a person defined by her Down’s syndrome. She needed to show that she was an individual but that she shares the same universal desires to love, be loved and accepted without limitations. I wanted Rosie to help the reader understand that human emotions don’t discriminate between those who are able and those who are disabled. We must never assume that someone who has difficulty communicating has nothing to say. “Mum told me, ‘Above all else you are a human bean…we love the same…we think the same…and we are as important as each other.’ The words in my head are the same as yours – sometimes they just come out wonky.”
            I had to consider the view of the world from someone with Down’s syndrome. Many people with Down’s syndrome have incredible empathy and are very in tune with the feelings and the needs of others – something I witnessed when I worked at Henley College and through knowing a friend’s daughter who has Down’s syndrome. Alongside this comes a very innocent view of the world that is lived in the moment. I had to be constantly aware of this, yet at the same time show how easily it is possible for anyyoung person to be fooled into believing that a person is good and trying to help them, when in fact they are being conned – or even, as in Rosie’s case, being lured into a very frightening situation. I had to be aware of the balance between Rosie’s worldview and a more street-wise teenager who would probably navigate getting lost in London more easily. 
            I also had to be aware of Rosie’s voice and the language she uses. I needed to convey the essence of the way she spoke, without making it hard to read. Many people with Down’s syndrome have anatomical differences in the mouth and throat region that affect feeding, swallowing, and oral motor skills. They can also often have poor muscle tone in the mouth area, so speech and language difficulties range from mild to severe depending on the person. Sometimes I ran Rosie’s words together to indicate this and to also show how Rosie’s thoughts could tumble over each other when she was anxious, stressed or simply over-excited. I also had to show her personal outlook; an ‘orange-segment moon’ hair like ‘fuzzy, blond ropes’.

            I was delighted that my sensitivity reader felt that I had got Rosie’s voice exactly right and that at times she felt that Rosie was herself in the way she spoke and how she saw things. It was important to me that I establish the lyrical voice inside Rosie’s head. Rosie might not be able to articulate everything she wants to, but this does not mean that she cannot do that internally. My thoughts on this came from having a brother who is very severely autistic and needs constant care to help wash, dress and see to his every need. His language skills are that of a three-year-old and yet he is capable of very occasional complex statements. At night time, when he is asleep, he shouts out constantly and it was while lying in bed listening to this that I realised how much more coherent he could be in his sleep and it set me thinking, ‘How do we know what anyone with a cognitive impairment might actually be capable of inside their minds?’ 
            The positive factors were many. It felt a privilege to be able to see through someone with Down’s syndrome’s eyes – to step back from a place of cynicism and to view the world with innocent and empathetic eyes has only enriched my view of the world by reminding me of what I learned with my brother - compassion, patience and selflessness. If writing Rosie Loves Jack can help people to understand those like Rosie and pass this message on, then it is a blessing, because we have so much to learn from these people and can only gain from their inclusion. If I can help pave the way for a new generation of acceptance, then it is a job well done.   

5.     Do you think it is important for a novel to have a first-person narrator with an
impairment? If so, why? 
I think it’s hugely important to have a first-person narrator with impairment because books can explore our common humanity and impart values. My Rosie enables the reader to focus on her abilities and not her disability. We hear all the time that children need to see the world they live in reflected in the books they read and yet books are in the main still exclusive. It isn’t just important for those children who are disabled but for those children unaffected. My aim in having a character such as Rosie was to enable young people to put on someone else’s shoes and truly understand what life is like for that other person. From that comes empathy, understanding, acceptance and the realization that we all have value and deserve to be heard. And we mustn’t be afraid to ‘get it wrong’ because we are all such diverse and complex characters.
6.     How do you believe it would have changed your narrative if the point of view had been instead that of a non‐disabled observer? 
Through Rosie I am able to show a unique perspective – but one that is also very relatable. We can recognize from our own experiences Rosie’s struggles with coping with prejudice, misunderstanding and manipulation and we can all be fooled into thinking someone has our best interests at heart. As I said before, seeing through the eyes of someone with Down’s syndrome can teach us so much about inclusion and how it generates acceptance and tolerance. This different perspective is one that is much more open and less judgmental and gave me, as the writer, an opportunity to explore this dynamic and showcase it to my reader. Without Rosie the story could have been much more cynical and detached as teenagers can be notoriously inward looking.
7.     At one point in the novel Rosie becomes homeless. This is another major issue, homelessness and young people. Were you conscious of the risk of raising too many issues and thus failing to do justice to any one issue? 
I was very conscious of this, but I was also aware that Rosie is part of a world where these issues are there for us to see, be it obesity, homelessness, sexual exploitation or addiction, to name but a few. With social media we can’t ever escape it. Rose’s journey is a reflection of life. In Bath where I live the number of homeless young people is shocking. For Rosie to find a safe haven with a young homeless person seemed logical after she had been dumped by the river in London - and a very likely scenario. There is an unwritten rule amongst homeless people to watch out for each other – you are a community. My homeless boy Tom’s inclusion wasn’t a device to raise the issue of homelessness, he happens to be there at the right time and right place. But, as a writer, there is nothing wrong in sowing small seeds of awareness on such issues, which could stimulate a dialogue that is productive. Through knowledge comes understanding and compassion. 

8.    Rosie faces many difficulties during her journey to find Jack. Despite                  
this, it is a very optimistic and often funny novel too thanks to Rosie's perspective. How did her character develop?

I had a picture of Rosie in my head a long time before I started to write the book. She was loosely based on a few girls with Down’s syndrome I met when working at Henley College, but in particular one girl who happened to be called Rosie. She was bright, fun and fiercely independent. 
My character Rosie really came to life when I formulated a character analysis, starting from when she was born and then establishing what had happened to her in her life to influence her and make her the person she was. For example, the fact that Rosie’s brother Ben had hurt his back when he was a little and had to be in hospital for some time gave Rosie the opportunity to become more independent and not be the constant focus of attention. It empowered her and shaped the person she was to become. Once I felt I had got her voice right and the language she uses, I started to see the world from her perspective, which was a joy to write with and her words flowed onto the page and her character grew. Rosie became real to me and lived in my head and by my side. She led me through the story – sometimes to surprising places!

9.   There is, now, a lot of attention being paid to diversity in children's literature, but do you feel that people with disabilities are still being neglected?

I think they arestill being neglected, but I think it’s more a question of not knowing where to start – and also the fear of getting it wrong and misrepresenting someone, rather than being deliberately negligent. Any publishing house will have sensitivity readers to insure they are representing people correctly, but even with that report they can hesitate to publish.                  
             The last couple of years haveseen some improvements, especially in picture books, but in my opinion MG or YA books still have a long way to go because, sadly, perhaps it’s also the perception that these stories might not sell here or abroad. This is why it’s so fantastic that publishing houses like Usborne are making sure that they do provide books that feature disabilities, which will break the ‘Catch 22’ situation and help inclusive books become more of the norm. After all, childrenneedto see the world they live in reflected in books they read, because it isn’t just important for those children who are disabled but those children unaffected. Inclusion breeds empathy, understanding and the realization that we all have value and deserve to be heard. 

10. Is it a difficult area to cover, unless you have a good understanding of what you are writing about? Does that discourage authors?

It is indeed a difficult area to cover unless you know what you are talking
about; even though you can research any topic in great depth, it’s never the same as if you truly understand or experience something for yourself. It is an especially sensitive area, so a lot of writers might hesitate to embark on a story with a character such as Rosie, for fear of getting it wrong and misrepresenting them, as I pointed out before. It canbe done, as proved by Mark Haddon and his famous book, The Curious Incident of the Dog in the Night,but interestingly Haddon made it clear that he had never specified any disorder and was uncomfortable that the book was seen as a handbook for autism spectrum disorders.
A lot of writers who do tackle disability have experience of it themselves – for example, Rachel Lucas, who wrote The State of Grace, a storyabout a teenage girl who has Asperger’s, has a daughter with this condition. 

     11. Rosie comes into contact with many different kinds of people and many of the responses to her are cruel; how true to life do you feel this is, and did this make it a difficult novel for you to write?

When my brother was young, there were many cruel responses to him, even to the point where we were told he should have been got rid of. People would stare at him and make very hurtful comments.Things are definitely changing as schools have become more inclusive and people with various disabilities are used in television dramas, film and advertisements. Inclusivity is helping change people’s views, but my brother can still get comments when he’s out and so can many people who have physical or learning disabilities. You only have to look on Twitter to see that, sadly, cruel comments are still the norm in some areas.
            It did make it difficult to write, because I didn’t like putting my character in that position – and it brought back the pain we all felt at the unkindness my brother had to and still has to occasionally contend with. But it was important to represent real life, warts and all, so that the reader can sit back and think about the way people can be treated because they have a disability and do it within the safe, non-judgemental pages of a book. Rosie can help my reader see a different perspective and by getting to know her as a teenage girl, in love, who they can relate to, is a step towards empathy and understanding. 

     12. The novel ends on a positive note, but still with some questions. Do you plan to return to Rosie and Jack, to follow up their story? 

I will definitely do Jack’s story if I can, as I always intended for my reader to see his story and what he is going through at his unit in Brighton, with all the diverse characters he is living with there. I’d like people to experience his side of the love story. It would be a story that stands alone too and helps people to understand what life is like with a brain injury. It will also have humour in it to alleviate the darker aspects of the story.
            I’d love to do a follow-on story with what happens to Rosie and Jack, but I’ll wait and see what the response is to Rosie Loves Jackfirst!

13.   What would you like your readers to take away from Rosie Loves Jack?

That they’ve read a great love story that entertains them and that they can relate to. I hope they take away a book, with a character that stays with them and that might raise some healthy discussion on some of the issues that are presented in it. I hope they can look at the world through different eyes and understand that human emotions don’t discriminate between those who are disabled and those who are able - and that by putting on someone else’s shoes they take a step towards empathy and understanding.

My thanks to The BookTrust, Northern YA Literature Festival, The Reading Zone, Books for Keeps, Wycombe High School, Dorothy Stringer High School and all my readers for their interesting and insightful questions.

 Mel Darbon

@Darbon Mel


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