When I was ten years old I began experiencing a persistent pain in my lower back, usually while walking. Since I hiked about a mile to elementary school each morning, you can imagine this became a frequent annoyance. Interesting thing about kids: they don’t always know when something is wrong. At least I didn’t. The pain was there when I walked but I just dealt with it and got on with things.
It all came to a head when my mother returned early from work one day and saw me struggling home while clutching my lower back. After a short conversation in which I explained I always had back pain, off to the doctor we went. Being a mother now, I can understand that what looked like anger on her face for my omission was actually fear. A few X-rays later and the doctor returned to our little room and announced unceremoniously, “Well, she’s going to need surgery.”
Not sure what he said after that. My entire being snagged on those words. My mother too I think because the doctor darted a look between us and murmured he’d be right back. As soon as he left the room the two of us clung to each other and dissolved into frightened tears.
The Diagnosis: Spondylolisthesis
I nicknamed it “Spondy” because, really, why are these medical classifications so ridiculous? This condition results when one vertebra slides over the bone below it, causing pain, numbness, and weakness in one or both legs. And there was ten-year old me walking a mile to school each way every day with it. I was a scrappy kid. Spindly, but scrappy.
I’ll spare you the gritty details of the days leading up to the surgery, the waiting room outside the prep area on the day itself, the wacky anesthesia induced hallucinations as I went to surgery (they used gas on kids back then), and the two week recovery in the hospital. When it was all over, I was looking ahead at three months in a body cast to give my spine time to heal while immobilized. The cast encircled my ribs and encased one leg to just below the knee. Being the kid I was, I took it in stride. Hey, the pain was gone. Things aren’t so bad. Of course, I hadn’t figured out that I’d have to deal with the world while wearing this thing. In point of fact, I didn’t realize there was anything to deal with at all. Then came school.
Having been able-bodied all of my life up to that point, I knew full well what other kids called the handicapped school bus I had to ride. I’m betting the disabled kids knew it too. The Retard Bus. The one that doesn’t look like the other normal buses. Everyone’s head swiveled to watch us unload from it and my awesome body cast made me walk with a hampered, jerky limp. Oh the stares. The frowns. If reality had text bubbles that showed people’s thoughts, they would’ve read, “What’s wrong with her?” “She walks funny.””I don’t like it.” That last was the big one, the way people seemed simultaneously repulsed by the way I moved and drawn to watch.
Yet, I was lucky. I had an amazing homeroom teacher who took the time to explain what was going on with me to my classmates (after clearing it with me), what surgery was, what a body cast was, and most importantly, that I was still me while inside it. She normalized it. She made it okay and everyone followed her lead. She also threw down the hammer, telling them that if anyone knocked me over that person would be in more trouble than they ever thought possible. To this day I appreciate her ferocity and her understanding. (Ms. Seamen, you’ll always be my favorite.)
It occurred to me, even then, what might things have been like if she’d been like the ones who stared? While we can forgive little kids for not knowing how to behave, what does it say about our society when adults do the same thing because, oh man, I experienced plenty of that. Sometimes I rode in a wheelchair, particularly in malls where my limp made distances difficult. I was never prone to self-consciousness until then. It came with the unease of others, the way people avoided looking at me but looked at me when they thought I couldn’t see, the way they edged away, the way I existed too much or not at all. There was never a moment when I could simply be in a place as myself and not as the disability they observed. It was impossible to ignore. That was hardest, this loss of self. Am I still me when no one else sees me?
The answer, if I could talk to my ten-year old self, is yes, of course you are still you, but you’ll have to fight for it because the rest of the world will try to tell you that the extent of your “self” is the body you inhabit, not the soul inside. As an adult I look back on that glimpse I had of disability and imagine what it’s like for those who can’t remove it like I did the body cast. It’s something I reflect on frequently, especially these days, and is an influence in my writing.
Over on Intisar Khanani’s blog, she is doing an amazing series of posts on disability in fiction which everyone should check out (The first post can be found here). As a kid I loved books and the adventures they took me on (ahem, and as an adult too) though I find it hard to come up with a title with a hero/ine who wasn’t able bodied. There’s the occasional side-kick or family member (or villain), but even if those character presences aren’t polluted by unflattering tropes, they aren’t the main character. The absence of these voices in fiction and on TV deprive society of truly understanding itself. If there was more visibility would it improve the way the disabled are viewed/treated? I think it would.
Need an example?
Take Tyrion from Game of Thrones, a favorite character for so many. Have you seen the forums? They discuss the man inside, his intelligence, his empathy, his smart mouth. They also discuss the things he deals with because of his dwarfism. The show and books bring that experience to light for those who know nothing about it. Now imagine the story without this voice. It would be lesser for it. The same is true for every world, with or without dragons.
What are your thoughts on disability in fiction? Are there any titles you would recommend?
Intisar Khanani said:
Learning to write something that you don’t have models for in fiction is incredibly difficult. It has been such a challenge for me to learn to write multicultural worlds, and I have yet to write my own heritage and background into a story. When I started out writing fantasy, all I knew how to write was what I’d read: medieval european-ish fantasy. I can still write that at the drop of a hat. Writing a more diverse world? It’s HARD for me. So I completely understand when you say that you’ve found it hard to create a title without an able-bodied main character. This is the fictional world we’ve internalized, even if it dismisses a part of ourselves and/or our lived experiences. Part of what I loved about reading Defying Doomsday (I’m sure you’ve seen the posts over on my blog) is it blew open my world–it gave me 15 examples of disabled MCs who are living their own post-apocalyptic stories, and the stories are that much more amazing for it, just as you said with relation to Tyrion in Game of Thrones (sad truth: I don’t watch TV and so haven’t seen it!) 🙂 Thank you so much for sharing your experiences in this post. It’s heart-rending and eye-opening and so very important.
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I think you’re absolutely right about this internalization of what we think the fictional world looks like, even as it contradicts the world we live in and the lives we’ve led. That’s why it feels ever more important to stretch the perceived boundaries of storytelling and works like Defying Doomsday do just that (loving the read along by the way). Oh, and if you haven’t seen Game of Thrones (it’s not an easy watch by any means) the books are amazing and Tyrion is easily my favorite character.
The first instance of disability in fiction I remember is Ben Mikaelsen’s YA book “Stranded”. Its young heroine, who lost her leg in an accident, rediscovers her own strength when she rescues and rehabilitates a pair of pilot whales. The story has stuck with me for more than 20 years because it afforded me a strikingly different perspective from most others I encountered. (And now that I’m an adult with orthopedic issues of her own, recalling a book like that puts my own small problems in perspective.) Giving readers the opportunity to see through other eyes is one of storytelling’s greatest gifts. The fact that Tyrion is everyone’s favorite “Game of Thrones” character is a perfect testament to this power!