Why Disability Representation Matters (Especially in Romance)

July is Disability Pride Month. This month-long celebration began the year the Americans with Disabilities Act (you may know this as ADA) was signed, in 1990 (1). This is an important month for me as I'm disabled. Now, I know in the disabled community, there are many more person-centered words to describe the experience. I use disabled as it is the legal term defined by the ADA to avoid any ambiguity. I also find disabled more encompassing of a variety of experiences. However, if disabled is not the word you would choose, please feel free to mentally insert your chosen descriptor. The ADA defines disability as "a physical or mental impairment that substantially limits one or more major life activity" (2). This includes temporary disability (recovering after surgery or being in a cast due to a broken bone) and life-long disability (blindness, chronic illness, mental illness as examples).

According to the CDC, 27% of adults in the US are living with a disability (3). This makes people with disabilities the largest minority group in the US (4). Based on data from 2010, more women are affected by disability than men, likely due to the greater prevalence of autoimmune diseases in women (5,6). So what does this mean in terms of representation?

To start, I think that views on disability are changing. Previously, disabled representation looked like including people with visible disabilities, such as wheelchair users and deaf people using ASL. Now, I believe that there is an effort to include people with invisible disabilities on screen and on the page. However, there is still a big stigma attached to people with invisible disabilities, both physical and mental. Take for example, Becca from the most recent season of Married at First Sight. There was quite an uproar online about how she should have been excluded from the show due to her chronic illness (this is a show that has included unemployed men season after season, but I digress) (7,8). Folks viewed Becca as a significant burden on her spouse and that they wouldn't want to be in her spouse's shoes (7,8). Even advice columnists such as Carolyn Hax outline all the awful, terrible things a partner of a person who is chronically ill will face (9).

This suggests that people with disabilities do not deserve love, partnerships, or even human decency. They frame the disability as a problem to overcome. Something to get through. Simply put a burden. This can feed into the stigma of having a disability but also feeds into our own feelings as people with disabilities. The persistent narrative that we constantly have to fight is that we are a burden on those around us. That we do not deserve the love and affection our loved ones bestow on us. And even worse, that we do not deserve to be taken care of.

This is why I think disability representation is so important, especially in the Romance genre (and all its subcategories). For me, a romance novel is about finding and celebrating the happily ever after. It is so empowering to read about women (and men) with similar struggles that I face falling in love, exploring their sexuality, and being perceived as a person first rather than a set of problems to overcome. This is why I'm committed to writing characters with disabilities in my novels. I want to show the world that "Hey! We can have a happy ending too!" (pun intended).

If you are looking for representative fiction, one author who I will gladly give heaps and heaps of praise is Celia Lake. Not only is she a prolific author, but her novels are set at a price point where you could buy all of her back catalog and not feel too bad about the cost. Her website even categorizes her novels by experience, so if you are looking for a particular representation, you can find an appropriate match in her catalog. A favorite of mine is Pastiche, where the main character has an ill-defined chronic illness (isn't that the case for so many of us as we are waiting for diagnoses) and follows her journey to discover herself in her new normal while reconnecting with her husband. It is quite a lovely read and captures not only the aspect of chronic illness well, but examines the experience of the abled-bodied partner as well.

Another good representation of chronic pain can be found in Mary Robinette Kowal's The Spare Man. An accident leaves the protagonist physically disabled while she also struggles with survivor's guilt. She uses a mobility aid (a cane) and has a cute, sweet little service dog. Even with the heaviness of what happened to the main character, this is a fast and fun read.

I do have some novels to avoid based on their problematic representations of disability. The first might be a HOT TAKE as the author is a relatively big name in the indie romantasy space. I had to put down the Harrow Faire series by Katherine Ann Kingsley. The main character gets magically cured and the way it's dealt with really made me feel that the author did not do her homework regarding the chronic illness experience. On the opposite end of the spectrum, there's Lycanthropy and Other Chronic Illnesses by Kristen O'Neal, which is really well done in terms of the chronic illness experience. But the way the characters talked about their illnesses was just too negative for me and a little triggering. This might be the HOTTEST TAKE, but I also could not believe that Violet in Rebecca Yarros's Fourth Wing actually had a chronic illness. I put it down after a few chapters. This was really surprising for me knowing that Yarros has a chronic illness, but everyone's experience of chronic illness is different. I'm sure that the representation rang true for some readers.

Hopefully, as more disabled authors have novels in the mainstream, we will see a more diverse cast of characters with varying experiences of disability. I also hope that the characters have more than just their disability to define them. I believe that we are starting to move in the right direction and I'm proud of the authors who are writing to their own experiences whatever that may be.

So Happy Disability Pride Month! I hope you can take a chance on either an author with a disability or a novel with disability representation this month.

Why Disability Representation Matters (Especially in Romance)

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