Adolescent idiopathic scoliosis is not uncommon, yet fictional depictions of the condition are rare. A drawn-out search, both online and offline, revealed just one novel for young people that featured a protagonist with scoliosis: Judy Blume’s Deenie.
The eponymous lead of the novel, Deenie, is destined to be a model. Or so her mother thinks. More excited about cheerleading than her potential career, Deenie is shocked when someone suggests she may have a problem with her back. After all, she hadn’t noticed that anything was wrong.
Her world is quickly turned upside down. Visits to a doctor lead to hospital trips, to X-Rays and the news that her spine has grown twisted. She has scoliosis. And, more horrifyingly, she is going to have to wear a brace. The idea of wearing a bulky brace for most of each day horrifies Deenie, although eventually she agrees to do it.
Although the change in Deenie’s life as a result of her diagnosis with scoliosis is something I can certainly sympathize with, I found her character problematic. She isn’t sympathetic, at least not at first, with her mean-spirited and bitter internal thoughts about other children. The way she thinks and feels about those who are disabled or have even relatively minor health issues, especially prior to her own diagnosis, made me uncomfortable.
In the closing chapters of the novel the tone shifts rather dramatically, with Deenie having developed a new understanding for the problems faced by other young people. She now understands what it is like to be different and has far more empathy towards others. However, it is very difficult to reconcile this Deenie with the spiteful and almost cruel child of just a few weeks or months earlier. The change is motivated by her scoliosis diagnosis, but occurs far too quickly. While some children may respond to health problems and the knowledge of their own imperfections by an immediate change in their personality, this feels almost like the idyllic world of a fairytale.
Showing the development from an uncaring child to one that understands pain is a useful tactic, but Deenie takes this so far as to be unbelievable. Her biting commentary and treatment of all those she sees as less than perfect left me squirming. Taken alone, Deenie’s comment that Old Lady Murray is “so ugly she makes me want to vomit” because of her curved spine could at least be dismissed as childish ignorance. It at least foreshadows her own condition.
On the other hand, there is little reason to include her thoughts about a young girl injured in a car accident and about Barbara, a classmate with a skin condition. One of the early scenes even has Deenie wondering if Barbara, who she cheerfully nicknamed “the Creeping Crud,” has leprosy. By the end of the story, of course, Deenie appears to have developed a budding friendship with her after Barbara tied her laces for her when she was unable to bend easily due to her new brace. The transformation of their relationship does not seem fully explained, with this action the only source of the change that I could uncover. This makes Deenie’s new regard for Barbara appear to be a direct result only of the way Barbara helped her, rather than being a natural progression into understanding that a skin condition doesn’t make someone worthy of ridicule.
As a teenager myself, a little older than Deenie, I can remember the way I was treated by some of the people at school because of my scoliosis. Two classmates shared mocking cartoons of me and spread them around the class. The kindness of everyone at my primary school about my condition is far less clear in my mind than the people who did that. Almost eight years on, I still remember how I felt that day and the frustration at how school had become a place I hated even more than I already had. While I saw my own experiences mirrored by the harsh negativity Deenie acts with, it sadly crossed the line from realism into sensationalism.
Showing Deenie’s initial distaste towards people with disabilities and injuries is useful only up until a certain point, beyond which it felt highly superfluous. In all honesty, these comments were enough to make me question recommending the book. The heartfelt message of its conclusion, when juxtaposed against this hateful start, is diminished, especially for young readers living with scoliosis who would have to wade through the early hurtful comments before they come to see Deenie’s journey unfold.
Despite this issue, which I found quite difficult to overlook, Deenie does have something to offer. The description of Deenie’s diagnosis and subsequent treatment is impressively detailed. Although the bracing method used on Deenie is no longer popular, her experience still resonates.
When Deenie visits the hospital and is then X-rayed, her comments reflected my own experience as a child, from her hatred of the gown you have to wear to the feeling of time stretching out as you wait to be seen. While a minor point, this is admirable and shows the level of thought Blume put into the novel.
Interestingly, the severity of Deenie’s curve was never explicitly mentioned, aside from the knowledge that it was not severe enough to mention surgery and that treatment would be fulfilling a “cosmetic” purpose. The lack of details such as this made for an increased sense of helplessness, with Deenie’s future controlled by adults who did not provide her with all the information she would need to fully understand what was happening. It is difficult to know whether this was a conscious choice or reflective of the time or place the novel was written. The health system in England may be different in terms of information provided to young patients, or practices may have changed over time. Over thirty years after Deenie’s initial publication, I was acutely aware of the severity of my curve from the start, right down to the degrees of the Cobb angle and the shape my back formed on the X-rays on the computer in the surgeon’s office.
While this review appears largely negative, there is one thing I must stress. In the 1970s, when Deenie was first published, it may well have been a positive representation of the experience of a child with scoliosis. I’m not able to judge that fairly, as I hadn’t yet been born in the ‘70s, but its portrayal hasn’t held up well. Here’s hoping modern novels like next year’s Braced will give today’s teens depictions of scoliosis that will resonate better than the one in Deenie.