Writing about any condition you do not have personal experience with can be difficult, but of course, writing about unfamiliar experiences is also an integral part of fiction. I have scoliosis—curvature of the spine—and portrayals in fiction often lack realism.
Why is there so little reflection on the factors that affect a person’s journey? The challenges faced by a person with scoliosis are not only related to the degree of their curvature. Scoliosis is often noticed around the onset of puberty, a time when young people are already experiencing a great deal of change in their lives. It is often idiopathic (without a known cause), leaving patients and their families searching for answers they may never gain. Traditional methods of intervention are very limited: either the use of a brace or spinal surgery. The suitability of other methods is more debatable.
Even the country someone lives in can have a massive influence on their experience of scoliosis. In the U.S., health insurance considerations may play a part in the treatment received (which could be used as a source of tension within novels featuring characters with scoliosis). Without delving into the issue of healthcare politics, it is useful to note that in Ireland, for example, waiting lists for scoliosis surgery can be incredibly long. This can lead to significant anguish for those affected and their families.
I was both “lucky” and “unlucky” in my experience of scoliosis, if you can see luck in such things. I was unlucky in that I needed surgery, but lucky in the speed with which I was treated, and to live in England where spinal fusion surgery is provided by the state as part of the National Health Service. Because of how rapidly my curvature progressed, I was operated on just months after finding out I had the condition at all, when I was eleven.
Although it’s not the greatest concern when writing about scoliosis, the length of time a character has to wait for surgery will be important to their journey. For me, this time was not long enough to come to terms with the way my life was going to change.
My first surgery appointment was cancelled because I developed a fever. When a space for surgery opened up, I was brought in with little warning. I had been treating the time before my operation as a countdown and the snatching away of those days felt like theft at the time. The emotional challenges that kind of unexpected change can bring—especially for kids—will be something most MG and YA readers can firmly identify with.
At over eighty degrees, my curvature was too severe for a brace to be an effective treatment plan. By the time I underwent surgery, my lungs were being affected and I was struggling to breathe. Now, unable to remember that part, I simply know that for a while I really suffered. And then it was over, and life carried on. Although I have had issues since, largely as a result of the curvature above the correction (proximal junctional kyphosis), the quick response meant a greater ability to correct my curve. While my scoliosis still greatly affects my day-to-day life, it does so differently than it might have without the surgery.
Although surgery might help to combat the physical problems of the spinal curvature, scoliosis can also lead to other problems. The psychological implications of the condition are something it is important to consider.
While potentially harmful language such as “hunchback” may have been used in Victor Hugo’s famous novel, in kid lit it may be best to limit its use. As a child, I heard that word frequently, and it was incredibly hurtful. It made me angry that people could be reduced to one facet of themselves and to be seen as lesser simply because their spine had grown crooked. Children can treat aspects of life they don’t understand harshly, and this ignorance can be biting, as I discovered when I found caricatures of myself drawn by a fellow pupil at school. It took a long time for me to grow more confident and to move past the effect that living with scoliosis had.
In high school, I experienced a different kind of difficulty. By this point in my school career, I was with students who had no idea about my back or how painful it could be. I sometimes felt awkward and out of place among people who assumed I was healthy because my curve had been corrected so well. When a disability is invisible, people view it differently. Friends did not quite grasp how much of a pain the small things could be.
One recurring issue that is still a problem today is that one of the screws from my surgery can stick out, so I feel it jutting out beneath the skin. Once, someone recoiled, incredibly squeamish, and I wished I could have done the same. Not an option for me and for the thousands like me.
Nor is hiding from the changing room mirrors. As my spine was fused before I underwent puberty, I never got to fully experience my big growth spurt. Stuck at five foot two, my torso is the length of an eleven-year-old’s. My back juts outwards, making finding a pair of jeans that don’t gape at the back almost impossible. Tight fabric T-shirts are a no-go as they make my rib hump visible. When the danger is gone, it is the little things that are the most upsetting.
One last thing: often, portrayals of teenagers dealing with scoliosis show them as superhuman. Brave. Fierce. Please don’t do that. It isn’t true to life. After all, we are just people too, good or bad or neither. We are all trying to live with the hand we have been given, and to stand tall despite what might hold us back.
9 Comments
I lived with a 70 degree curve until I was thirty-six (then finally, a double fusion from T8 through my lumbar took me to 16 degrees). Growing up with scoliosis, kyphosis and a frozen leg, the Hunchback of Notre Dame was something I never stopped hearing. And it never stopped hurting. Loved your post, Emma.
As someone who has scoliosis since birth, I too find coverage of scoliosis in books difficult. Every book I remember reading as a child concerning the condition always had the same premise – super athlete with tons of friends might not be able to be a pro athlete anymore. While I appreciated that a book talked about scoliosis, this lone premise did not speak to me. I was always crooked – and still am – even with the surgery. I couldn’t be athletic even if I tried. Physical Education class was a nightmare. I couldn’t do well so people hated when I was on their team and would taunt me. Later I would be able to exercise alone with a partner and people would fake friend me to get out class to do this.
Even though my fusion was a success I deal with the results every day – pain, diminished lung capacity from a barrel chest, no neck, insides smushed into the torso of a child, never being to purchase clothes off the rack without massive alterations, etc. You also spoke of trouble as a teen. Try getting a guy to like you with severe scoliosis. Thankfully I found an amazing one, but it took many years to find someone willing to overlook physical issues. And it’s so difficult to find friends. When you have difficulty even getting out of bed from pain and anxiety, it’s difficult to relate to people and have other people relate to you. This is one of the problems I have with people in general most these days. When you’re in massive pain, it’s difficult to get excited about the latest meme or celebrity. And frankly, I understand why people don’t want to be around someone like myself who is serious when they just want to have fun. Not that I can’t laugh, but I’m dealing with doctor visits mostly – not cat videos.
While diminished athletic capacity is an issue, this is what I faced because of scoliosis – pain, ridicule and death threats because of my appearance, inability to buy clothing, lack of friends, depression, overwhelming anxiety when out in public, not able to go a day or even a minute without being reminded of a condition I supposedly conquered over 25 years ago.
As someone who also has scoliosis, it is so nice to read this article and see the comments. My experience has been different from the author’s and the two other people who posted in that the degree of curvature is much less (around 20 degree curve) and I didn’t have surgery (although one doctor suggested it). I was completely painless until I turned 32 when the chronic lower back pain hit hard. It got to the point that when I woke up in the morning, I had to meticulously plan how to turn on my side, get out of bed and put my clothes on with the minimum of pain; in a library, I dread that the book I am looking for is on one of the lower shelves which would mean I would have to bend down because that hurts, and I am always aware of which tube station, airport and hotels are accessible because I worry about having to lift heavy luggage which would cause pain as well.
But as Emma, the author, points out, it should not be about the degree of curve and the visibility of the disability. People like to think of disability as an absolute category (you are either disabled or not), but if we think of it as a spectrum, most people who would not identify as disabled would find themselves further along the spectrum than they would like to think. Maybe, this can raise awareness about how arbitrary official, medical definitions of disability are and that disability is part of human destiny, not a minority experience.
I was just discussing this with a family this weekend whose 18 mo old sone just had his first casting for treatment of infantile scoliosis secondary to Ehler Danlos. They wanted to know if I could recommend any fiction for their older children that showed characters dealing with scoliosis or similar issues, in an attempt to help them understand why they would do treatment so young. Unfortunately, I was at a loss for book recs. But as a former pediatric PT, I was able to help in other ways. Thank you for shining a light on this type of disability here.
Hi Katey,
Emma, the author of this article here. I also have Ehlers-Danlos syndrome and know how tricky the interaction between different conditions can be, so I do hope that the family’s little boy is as well as he can be at the moment.
It is quite sad how underrepresented disabilities can be out there, I have tried in the past to find books about scoliosis and could only come across Deenie by Judy Blume. Thanks for your comments and glad that you were able to help him.
As a lover of diverse kid lit and someone who suffers from scoliosis, I’m surprised I haven’t actually read a book about it. I was lucky enough to catch it early (10) and the back brace I wore for 3 years corrected it so that it’s only about a 20 degree curve. However, I still remember avoiding sleep overs so no one would know about the brace I had to wear (not to mention how uncomfortable it was to wear it). Almost 8 years later, I don’t think about my scoliosis as much since its not obvious when you look at me, but I still get hunch back comments! People really have no idea how hurtful that can be, and I can’t imagine someone using that in a kid lit book about scoliosis. Anyways, thank you for writing this article!
Great to see this post! I wore a back brace for scoliosis for six years in the early 1990s, and I was always sad that there weren’t more books about it, . . . Just DEENIE when I was growing up, which represented the bracing techniques of the 1970s, and therefore didn’t feel relateable to me. If this isn’t inappropriate to add: I’m now an editor at Scholastic, and I’m delighted to be publishing a book about a girl with scoliosis next April: BRACED by Alyson Gerber. (Aly had scoliosis and wore a brace too, and we connected via #MSWL on Twitter. It was fascinating to compare our two experiences of the disorder in the course of the editorial process.) You can see the cover and read more about the book on Aly’s site: http://alysongerber.com/cover-reveal-for-braced/
It was interesting to read about your experience and the comments that followed. I was diagnosed with scoliosis when I was 13. I have two curves, one in my lower back and the other at the base of my neck; both are around 27 degrees. I had so much pain doctors thought I had a tumor on my spine causing the pain; luckily there wasn’t a tumor. I had a back brace made but it was made wrong so it didn’t fit properly. Doctors refused to do surgery because they said the curves weren’t bad enough to need surgery therefore I did physical therapy for awhile to no avail. Now at 30 years old my back is getting worse and is knocking my hips out of joint causing severe pain to the point where I struggle to walk at times.
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