Written by Elisa Shaholli with the support of the DAC team
I’ve always been a voracious reader. It started off with children’s books, which transitioned into fantasy, and morphed into a love for the romance genre once high school hit, and this is where I’ve been ever since. As part of my reading journey throughout high school and then college— times when I was trying to figure out who exactly I was, what I liked, where I saw myself, and what I saw myself doing–– I sought out books that could help me explore these different questions. With my love for romance, this genre was a natural place I looked to aside from the more traditional genres one would expect to find answers to the questions of “Who am I?” in (namely self-help, non-fiction, memoirs, or even history).
Although there are many facets to my identity, an important component to who I am is the fact that I am a woman with a disability. In many of the spaces I’ve been in while growing up, I tended to be the only person with type one diabetes. Or, if I wasn’t the only person with it, I happened to be the only female with it. Although we often hear how widespread the impact of diabetes is in the United States, with an estimated 1/10 of the population having some form of diabetes, I found my experience with diabetes to be quite lonely, even isolating, for the most part growing up. Although these sentiments have changed, since entering university life and being in spaces like the DAC where I’ve found community with others with disabilities or with allies, in the times when I felt like I was alone with a chronic illness and a lifelong disability, I turned towards books to find a space that could bare witness to similarities that I was going through in my own life. Unfortunately, I found it extremely difficult to find much, if any, literature in any genre that incorporated characters with disabilities, or more specifically, type one diabetes.
There are some who think, “Well, why does this matter? Why does it matter what’s inside (or not inside) pieces of paper with ink, inanimate objects that aren’t “real” but figments of people’s imaginations?”
It’s true that fiction books are objects at the end of the day: they don’t feel emotions and aren’t ‘living’ like you, the reader, but that doesn’t mean that they don’t hold power or help steer who we are as people. In 2022, I wrote a piece in Disability Studies Quarterly analyzing disability in the Star Wars franchise and how important film and fantasy can be when it comes to forming our conceptions of real-world situations and identities. What I wrote there to cement why fantasy and film when it comes to disability representation matter, can dually be used to explain why fiction books, more broadly, and romance more specifically, and what is or is not represented in them, is such an important topic to discuss:
Although fantasy as a genre may seem removed from realistic concerns, it can provide “escapes from reality, [but] can also empower”… fantasy enables children and viewers of all backgrounds the ability to experiment with different worlds and cultural landscapes. In learning of a new cultural and social environment through the fantasy world, a viewer can acquire a better understanding of their own in real life…Fantasy creates a world separated from our own, yet deeply linked to it through the values and themes explored. An interpretation of the genre’s persistent themes, archetypes, and images can unveil deeply rooted realistic viewpoints… In fantasy, what may be impossible in reality is a norm in the manufactured world. What is yearned for or loathed in that world can provide a window into one’s own consciousness. The very nature then of fantasy can be critical in relation to Disability Studies, where through the study and re-evaluation of disability’s image, insight can be gathered into evolving, or stagnant, conceptions of disability and its role to the individual and society (Shaholli 2022).
To some extent, all types of fiction are fantasy. They may not be within the traditional boundary of a fantasy (where in my mind I think of some mystical, ethereal creatures like elves, or vampires, or wolves, or my favorite, dragons, existing), but fiction still creates a manufactured world with manufactured characters with manufactured problems. In essence, a type of fantasy. Thus, what is both inside fiction novels, and what is chosen not to be inside, matter.
So where does romance come in here? Part of the reason romance books are so important to analyze is the sheer quantitative and economic importance they have: “Demand for romance novels is booming in the U.S., with sales of print copies surging about 52% in the year 2022 even as book sales saw a decline” (Burnett, Handel, and Summers 2023).
Romance novels generate “well of $1 billion in sales” and represent “23% of book sales in the US” (McElhearn 2024). When we look at the New York Times Bestsellers list for 2024, we see romance books dominating for months on end as bestsellers: Sarah J Maas’s A Court of Thorns and Roses for a straight 32 weeks on the Combined Print & E-Book Fiction list, Rebecca Yarros’s Fourth Wing and Iron Flame for 69 and 46 weeks, respectively, and Colleen Hoover’s It Ends With Us for a staggering 143 weeks, to just name a handful (The New York Times, n.d.). From May 2022 to May 2023, over “39 million printed copies [of romance books] sold… an increase of more than 50% from the prior year” (Associated Press 2023). With romance books being consumed so heavily, especially in the past few years, the genre warrants analysis in its importance to different representations of identities to us readers as consumers.
Aside from the economic impact shining a light on why this genre deserves time and breadth in analysis, romance matters for a plethora of other reasons, too. The romance genre has a certain ‘code’ in which it is to be written, following a typical structure which has a happily ever after (known as ‘HEA’) (Lovett 2018). If there isn’t a happily ever after, then it can be argued that the book isn’t even a romance, but rather a drama, tragedy, or some other genre. Why this structure matters is because of the ability to give the reader hope that regardless of the various trials and tribulations faced throughout the novel, problems become solutions and everything ‘will be okay.’ In a tumultuous world where anytime you open the news you’re bound to have to deal with anxiety, a guaranteed ticket to a happy ending when consuming media is desired by many people, which is a reason why romance can be such an attractive genre for readers.
Alongside this guaranteed happily ever after, as humans, we learn from our environment and surroundings. No matter how introverted or extroverted someone is, humans need social interaction and community. Some desire more social interaction than others, but the bottom line is that no one wants to be completely alone. Romance, through focusing primarily on a core relationship between various characters, helps readers explore and learn both healthy and unhealthy aspects of relationships that they could then implement into their own lives. The reader can use what they read about in a book to help them learn about what they may or may not want reflected in their own romantic or platonic relationships.
For readers who may be living through a difficult time period or specific situation, books can act as strategies to better analyze their own situations. Even if one is not going through a difficult circumstance, reading about certain topics in romance can help widen one’s perspective and better understand what others are going through. A book that comes to mind for this is Colleen Hoover’s It Ends with Us, a book-turned-movie discussing the impacts of domestic violence through family generations and the difficulty in escaping one of these relationships.
Nur Rahman writes in her review of this book that, “many who have never been in abusive relationships wonder why victims stay. Often, blame falls on victims for not leaving; there is a universal lack of understanding around their inability to do so. While reading the book, I found myself in a similar position, constantly thinking, “Why doesn’t she just leave him?” As the story progressed, the answer became clear: Lily loved Ryle so much she believed he could change, a mindset many victims adopt. Hoover displays this victim mentality, highlighting the difficulty when the person you love is the one hurting you the most physically and emotionally… I have never before read a book that touches on such a relevant subject to our world in this powerful of a way” (Rahman, n.d.).
Although labeling this book a romance can be misleading, (It Ends with Us is better classified as Women’s or Contemporary Fiction), the book has a romantic relationship at the forefront. Readers who have read this book are able to better understand domestic violence, its impacts throughout family generations, the difficulty for the survivor to break free from these situations, and the strength and bravery in survivors.
This ability to explore deep, difficult topics that center between people is a core tenant of romance and why it is so powerful to readers and crucial in literature analyses.
So where does disability come into play here?
The representations we see of disability in the genre help us as readers better understand the perspectives society has towards disability and how we should navigate relationships when having a disability. Unfortunately, in many romance books with disabled leads historically, the disabled character was either “cured of their disability or their significant other was portrayed as a saint who was willing to look past their disability” (Grinnan 2019). These types of negative portrayals impact the way disabled readers view their own disabilities or themselves as a person, getting signals from the media– much of the time written by authors without a disability– on how non-disabled people view them.
This attitude is dehumanising and suggests that being in a relationship with a disabled person is an act of charity… It’s impossible not to internalise that and it’s easy to convince ourselves that we aren’t deserving of love or that we have to minimise our disability in order to get our happily ever after. Ableism is a daily reality for most disabled people but for me romance novels are supposed to be an escape from reality, an idealised version of what life can be like (Grinnan 2019).
When novels are able to reject these common tropes and instead write well-developed characters with disabilities who are not ‘acts of charity’ or in need of curing to be loved, these portrayals can provide meaningful outlets of representation for those with and without disabilities who are reading. Positive disability portrayals signal that “disabled people can live happy, fulfilling lives” (Grinnan 2019) and that disability is not a barrier to finding love. Disability is an aspect of someone’s being, but it shouldn’t be a barrier or a hindrance to finding a meaningful relationship. Positive portrayals of disability in romance highlight this fact and allow readers to explore additional elements and considerations that may be in play when disability is introduced into a relationship, but not ward off the possibility that a healthy, fulfilling ‘happily ever after’ is possible.
Additionally, a common stereotype of those with disabilities surrounds the image that people with disabilities are asexual (Esmail et al. 2010). This stereotype leads to a constantly spinning wheel of impacts: a lack of education towards disability and sexuality contributes to stigma of disability and sexuality, which in turn limits the ability for those with disabilities to explore and create a sexual identity for themselves to begin with. With minimal availability of sexual educational resources including disability, romance novels can act as viable outlets that are accessible to learn from. Including disability in romance novels is not only important in terms of the complete representation of the character as an individual who has a disability, but also the exploration that disabled people, too, can be in romantic relationships which may or may not include a sexual identity.
Knowing what we know about romance and why positive representations of disability matter in the genre, it has led me to start a new series I’ll be exploring through the DAC blog called “Romancing Diabetes.” This series will explore various romance books who feature a main character with diabetes.
Surprisingly, in the past few years since the COVID-19 pandemic, a rise in books in the romance genre have portrayed main characters with disabilities and specifically with diabetes, being published with extreme success. Authors such as Helen Hoang, Talia Hibbert, Tessa Bailey, Ali Hazelwood, Chloe Liese, Rebecca Yarros, and Hannah Bonam-Young are a few authors who are writing bestselling romance novels with main characters who are Deaf, use prosthetics, have diabetes, Autism Spectrum Disorder, or Ehlers Danlos syndrome, and more. Many of these authors, too, consider themselves to be part of the disability community, writing about characters with identities they themselves can relate to. For example, author Talia Hibbert, bestselling author of over 15 romance books, shares her journey of becoming a romance writer, citing:
‘I knew that I wanted to try my best and make a job out of it because at that point I was coming to realise that if I didn’t find a job where I can work for myself and be flexible, I was really going to struggle because of the disabilities that I have and people just not wanting to employ me’…Almost every book she has written is a step towards breaking stereotypes and giving happy endings to people you don’t normally see in the romance world… People of different colours, body types, sexual orientations, and disabilities are all at the forefront of her stories. The reason? She just wants to see more people like her get the representation they deserved (Dubey 2020).
Fortunately, the disability-in-romance landscape today varies quite a bit from the landscape I was reading in even from a few years ago. When doing research for this new series, I compiled a list of over 20 romances that included a main character with diabetes. As this series goes on, I’ll explore exactly how that representation is portrayed (is it 20 books with good representation, or 20 with the common tropes mentioned earlier?), but still… there’s over twenty that exist.
Although we aren’t in the triple digit category yet (or more), and therefore it might not seem like a vast number given the millions of books swirling in circulation, for the younger Elisa who could barely find one, it’s an exciting prospect to know that these books are out there being made and consumed. There’s a little plot on the land that is Romance-landia, and it’s growing with books who have characters who I can relate to. And it’s that little plot that gives other writers the encouragement to go plant and sow their own stories too.
References:
Associated Press. 2023. “Era of Romance: Exploring the Unprecedented Boom in the Popularity of Romance Novels.” The National Herald. https://www.thenationalherald.com/era-of-romance-exploring-the-unprecedented-boom-in-the-popularity-of-romance-novels/.
Burnett, Elena, Sarah Handel, and Juana Summers. 2023. “Even as overall book sales are declining, romance novels are on the rise.” NPR. https://www.npr.org/2023/06/02/1179850128/even-as-overall-book-sales-are-declining-romance-novels-are-on-the-rise.
Dubey, Shivani. 2020. “‘I just want people to feel happy’ — romance author Talia Hibbert on self publishing and writing intersectional characters.” Medium. https://medium.com/15-01-20/i-just-want-people-to-feel-happy-romance-author-talia-hibbert-on-writing-intersectional-97d1b22c0c4a.
Esmail, Shaniff, Kim Darry, Ashlea Walter, and Heidi Knupp. 2010. “Attitudes and perceptions towards disability and sexuality.” Disability and rehabilitation 32 (14): 1148-1155. 10.3109/09638280903419277.
Grinnan, Dabney. 2019. “Why Disabled Romance Is Important: A Guest Post by Brooke Winters.” All About Romance. https://allaboutromance.com/why-disabled-romance-is-important-a-guest-post-by-brooke-winters/.
Lovett, Robin. 2018. “The Structure of Romance.” DIY MFA. https://diymfa.com/writing/structure-romance-writing/.
McElhearn, Kirk. 2024. “Why Are Romance Novels So Popular?” Literature and Latte. https://www.literatureandlatte.com/blog/why-are-romance-novels-so-popular.
The New York Times. n.d. “Combined Print & E-Book Fiction – Best Sellers – Books.” The New York Times. Accessed November 23, 2024. https://www.nytimes.com/books/best-sellers/combined-print-and-e-book-fiction/.
Rahman, Nur. n.d. “‘It Ends with Us’ illustrates realities of domestic abuse.” The Standard. https://standard.asl.org/19425/arts/it-ends-with-us-illustrates-realities-of-domestic-abuse/
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