In 2011, I suffered a severe and catastrophic spine injury. It happened in a flash. One moment the world was my oyster. I could go anywhere and do anything. The next, I couldn’t walk and an ambulance was coming to take me to the emergency room, where I’d learn my life had irreversibly changed.
Since then, I have had four reconstructive spine surgeries and a veritable army of doctors and physical therapists. The pain I feel from this injury is still so intense, I have had electrodes imbedded in my spinal column, the purpose of which is to scramble the pain signals my brain receives from the source of my injury.
In the blink of an eye, I went from being part of the world to seeing stairs everywhere, each one an insurmountable obstacle.
Suddenly, my days became defined by a grim calculous:
My car is here. The store is there. I hurt this much. My leg is doing this. Can I access the store?
I would really like to do (insert event here) but can I get in the building? If I can, will there be a place for me to sit?If I sit, will I be able to participate or will I be looking at someone’s back the whole time? Is it worth attending?
The Americans with Disabilities Act ensures that public spaces adhere to a certain level of accessibility for those with disabilities by adding ramps, closed captioning devices, workplace accommodations and the like. However, accessibility in our daily life is still a problem, from non-disabled people using disabled parking spaces (“I’m only picking someone up. I’ll just be here a minute…”) to businesses who only do the bare minimum to adhere to ADA standards, to bad accessibility practices, accessibility in this world is still an issue disabled people face regularly.
In 2011, I went from being part of this world, to only being invited to be a part of some of it.
There is a daily, often silent, overlooked struggle involved in being disabled, a fight to belong in a world where consideration for our accessibility is often a moderately regulated afterthought.
I learned the fantasy genre through my brother, who is autistic. As a teen, he would hand me fantasy books to read and then we’d talk about the characters in those stories. I quickly learned that these characters were my brother’s way of telling me how he felt and explain how he interacted with the world. From the underfoot boy in the castle kitchens to the unsuspecting chosen one to Tyrion Lannister, my brother used fantasy as a lens to tell others how he was feeling. To express the emotions he couldn’t find words for.
It was my brother who first said to me, so many years ago, “I want to read a book with someone like me as the hero. I want to show people that I can be amazing too.”
That’s a phrase that has echoed throughout the corridors of my mind every day since my injury.
Disabled representation has improved dramatically over the course of my time in publishing. When I first started reviewing, I hardly ever saw disabilities mentioned. It hasn’t become until recent years that it has gained more focus. I’ve started seeing fantasy books with characters using wheelchairs on the covers, or autistic protagonists, or characters with POTS, and this should be celebrated.
When I was writing The Necessity of Rain, I made some very conscious disability representation choices for Rosemary, who has some of my physical disabilities and chronic pain to the elements of the world she lives in. I realized, early in the process of writing the book, that fighting to be part of a world that is not made with me in mind is exhausting, and I didn’t want my character to have to do that. So I created an accessible world. The reason the Hall of the Gods shifts isn’t because I thought the idea was cool. It’s because I wanted Rosemary to be able to access any part of that place as easily as everyone else.
I wanted to not only create a disabled character, but a secondary world that was accessible to disabled characters.
This is no more obvious than Rosemary’s arbor:
None of the buildings have stairs, I notice. Ramps, everywhere.
Oh, Rosemary. She has created for herself a world, and she can access all of it.
It wasn’t until my editor made a note about how unique having such an accessible secondary world was that I realized that there were very few worlds I could think of that had ramps built into the buildings, or any real nod at accessibility features unless there are disabled primary characters. There are some, and they are growing in number, but still not nearly enough.
We are so used to reading books about disabled characters fighting to find a space for themselves in the worlds they live in, to access things that aren’t accessible, that we rarely think about flipping the calculous and creating more accessible worlds. More, we rarely think about the power of creating accessible worlds. It wasn’t until I saw See (on Apple TV) that I truly understood how powerful it was to see a secondary world that was so accessible. And so much had been considered in the crafting of it.
Why do all the castles have stairs?
Or, as Ace Ratcliff said in her article “Why Are Spaces in Science Fiction not Wheelchair-Accessible” on Gizmodo:
Given that, is it really surprising that our fantasy worlds are reflective of the inaccessibility that occurs in our real-world society? The hundreds of thousands of fictional worlds built with all those staircases are a silent but persistent signal that disabled representation isn’t just a low priority, it rarely exists at all…
When I read articles about disability, the following statement can be seen over and over again: Disability is the only minority group someone can join at any time. A recent study in the UK showed that eighty percent of the disabled population was not born with a disability and fifty-three percent of households were connected to someone with a disability. Globally, one is six people are disabled, or sixteen percent of the population. That’s an estimated 1.3 billion people (World Health Organization).
Considerations for accessible spaces in fantasy might seem… odd, but when you consider how much of the population needs accommodations to truly exist as part of the world, you’ll see the lack of them in our secondary worlds as more a symptom of a broader problem than anything else. Representation of characters is wonderful, but if they live in worlds that are not made for them, then the representation is only going partway.
There is value in seeing a disabled character struggle and find their place in the stories we’ve crafted for them, but I cannot help but wonder if it always needs to be such a battle. As authors, we have the power to create whatever worlds we so choose. We can make single-story castles, or systems of Braille. We can create sign languages. We can add ramps to buildings, and show people using them, even in passing. We can make worlds that show that disabled people are invited here too.
Chances are, even if your primary cast isn’t disabled, someone in the world is. And someone reading your book is. And both of those people deserve to know that this is a world they are invited to be part of. That this is a place where someone like them can exist too. For a moment, we were seen.
Speculative fiction is a genre that allows us to push boundaries, to explore life in realities full of magic and monsters both mysterious and wonderful. These secondary worlds of ours are places we can create however we so choose. Representation requires more than just the character, it also involves the world they live in.
It wasn’t until I had my spine injury that I understood how difficult it is to exist in this world when you aren’t able-bodied. Suddenly, each day was a series of little battles, silently fought, that no one ever really notices. So much of our cities, buildings, houses, and landscapes aren’t made with disabilities in mind. In a snap, I became a person who lives in a world that is not made for someone like me and I am only invited into the accessible part of it.
People have always turn to stories for an escape, to feel seen, to feel like we matter. Speculative fiction is a place where we can leave our biases at the door, build a ramp, and let everyone into the story.
Perhaps it is time to create more of them.
The Necessity of Rain
"It begins with a butterfly in chains."
"The world is dying."
Of Honey and Wildfires
"From the moment the first settler dug a well and struck a lode of shine, the world changed."