Tag Archives: Albinism

albinism disability Jo Jo Moyes

Dear Jo Jo…

I emailed Jo Jo Moyes recently. I wanted to tell her how much I enjoyed reading Me Before You, but more importantly, that I loved the wonderful way she portrayed her character, Will Traynor (and by that I mean bringing a leading man with a significant physical disability into mainstream fiction).

Of course, Jo Jo is not the first writer to do this. Many authors, myself included (with Will ‘Wheels’ Travelli in my 2013 debut novel House for all Season), have included character traits that are not deemed as ‘the norm’ for their male/female romantic fiction couple. By not following the traditional/safe route when it comes to creating characters readers love, authors do take a risk. Some of you might be shaking your heads in disbelief, but I received two scathing comments about my Will being in a wheelchair (anonymous Good Reads type comments). They sure were a blow to this debut author. But I picked myself up and I’ve since written three more books, each time ensuring there is a character in the story who refuses to be defined by their physicality.

As I found out, even Jo Jo was heavily criticised by disability groups who felt the portrayal of her Will portrayed a negative view of life for those living with quadriplegia.

In my 4th novel, The Other Side of the Season, I have both a leading man who suffers incomplete paraplegia, and Pearl — a person with albinism. The idea for Pearl came to me after reading a Ramp Up interview with Dr. Shari Parker. A fierce advocate, Shari (along with others) are striving to change the way people with albinism are perceived by the broader community. (This perception often influenced by movies/TV.) With the pen being mightier than the sword, there’s no better place to add weight than in our fiction novels. If thoughtfully done, novels (and movies) can tackle ‘different’ respectfully and kindly. They can be a starting point for opening dialogue on various subjects and provide a safe place in which to learn.

With the pen being mightier than the sword, there’s no better way to weigh in than in our fiction novels. If thoughtfully done, novels (and movies) can tackle ‘different’ respectfully and kindly. Sensitively and accurately portrayed, characters can be a starting point for opening dialogue on various subjects and provide a safe place in which to learn.

But . . . “Let’s get the facts straight,” as Shari Parker says in an interview. “In popular culture, people with albinism are often depicted as evil or supernatural.” [She] wants to set the record straight about the condition and remind others that widespread inaccuracies about albinism should be challenged wherever they appear.

I totally agree, but is Hollywood getting the message? According to an online source: “…from 1960 to 2006 there were 68 films released featuring an evil albino, with 24 of these appearing between 2000-2003. In comparison, there were only a handful of movies with albino characters that were sympathetic in nature, and many of these characters were used primarily for comedic value, ie: giving the characters stupid nicknames and making repeated gags about their skin condition.” And these movies were not small. They were significant in terms of box office success. (eg Including The Da Vinci Code and Cold Mountain.)

Incredibly, as recently as 2013, The Heat (starring Sandra Bullock and Melissa McCarthy) included largely negative, inappropriate, and even a few disgusting one-liners that ridicule a character cast as an Albino. This sort of depiction only serves to reinforce misunderstandings, societal prejudice, and discrimination. And don’t think it’s only crime/cop shows. In Ice Age: Dawn of the Dinosaurs, the main antagonist, named Rudy, is cast as the albino Baryonyx who is vicious and vindictive, unlike the other dinosaurs. Okay, so every good story needs conflict and a great antagonist and it’s easy to fall back on stereotypes.

Easy for the writer, perhaps. Hurtful for those being portrayed.

It’s not hard to write well-rounded, emotionally complex characters with disabilities who are not defined solely by those disabilities.

I like to challenge myself as an author—be it character, setting or structure—to make my stories stand out. This, along with and Shari’s interview, is why I decided to create Pearl in The Other Side of the Season. And I’ve received so many lovely messages from readers about her (and her relationship with Jake). She was intended to take on a secondary role, but like Alice in Season of Shadow and Light (also mean to be a secondary character when I wrote her in), readers have warmed to Pearl, even asking me to give her a story of her own. I don’t like using the word disability. I prefer the word extraordinary—and Pearl certainly is that—making her special, while still portrayed her as a regular girl.

I don’t like using the word disability and I don’t play up differences. I prefer to use the word extraordinary to describe some character traits. Pearl certainly is that—making her special, while still portrayed her as a regular girl.

And in case you’re going to ask . . . I found a list on Good Reads that has 395 books listed as being a romance with a disabled (substitute ‘extraordinary’) hero/heroine.

Have you enjoyed a story that has an extraordinary character? Let me know.

My choice is most definitely the  Jo Jo Moyes novel, Me Before You. I do intend seeing the movie soon, but for now, I am very happy to let Jo Jo’s beautiful characters and the imagery her words created linger a little longer in my mind.

Meet Will in House for all Seasons

Meet Alice in Season of Shadow and Light

Meet Pearl and David in The Other Side of the Season

 

A Pearl of an Idea

pearlMeet Pearl…

No, not that pearl!

 

Pearl is actually the daughter of an oyster farmer in my latest novel, The Other Side of The Season.

Pearl is an example of what we call in the business – a secondary character. This means she was created to support the lead characters, providing them with, among other things, a way to express themselves, to help foreshadow events, or to provide background while still moving the narrative forward. Sometimes, however, a secondary character can go rogue.

Another example of a secondary character is Alice, in Season of Shadow and Light. I created her after I’d finished the initial draft, actually re-writing the manuscript to add Alice as a “nanna/babysitter” to six-year-old Matilda, thus freeing up Paige, the mother, to get on with the story without readers saying: “But where’s the kid”.

Like Alice, Pearl has found her way into the hearts of readers. One reason might be because I let her hook up with Jake, and Jake is, well, I’m told he’s just adorable. But Pearl is pretty special, too, because she’s a little different. And I did that on purpose.

Pearl is a person born with albinism. Some of you might be more familiar with the word ‘albino’ but as I leanred when researching this character there are misconceptions and lots of misrepresentation in certain media about his inherited condition. I wanted to do my bit towards correcting this. It’s said the pen is mightier than the sword and I believe authors have the opportunity to make a difference in the world. Literature can start conversations and lead change. Through their stories, authors provide people with a safe place to explore social differences that they might not otherwise understand or encounter. With all four of my novels I’ve been inclusive, using fiction to normalise that which society may see or label otherwise. I do this by including characters with differences — although not focusing on the ‘different’ or applying a label to it. Acceptance comes from understanding. If things like sexual orientation, illness, race, language, physical traits/conditions and psychological issues are included into everyday fiction maybe they will one day become ‘the norm’.

Dr Shari Parker - TOSOTSYou might have noticed I thanked Dr Shari Parker in my acknowledgements. If you Google the name, or go to the Albinism Fellowship of Australia website, you’ll learn a lot more about living with albinism and the importance of ending the myths created in some books and films that depict people with albinism as evil villains or supernatural freaks. I am very appreciative of Shari’s assistance.

Dr Shari Parker: “Albinism is an inherited condition where the body produces less than normal amounts of melanin – a substance that gives skin, hair and eyes colour. About one in 17,000 Australians is born with albinism and about one in 75 carries an albinism gene. If a carrier mates with another, they have a one-in-four chance of a baby with it.”
Read more: http://www.theage.com.au/national/albinos-think-its-time-the-world-played-fair-20111007-1ldvk.html#ixzz4CxDT37C9
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SOSAL B format

Alice steals the story

SOSAL final

Pearl steals the story