For months now, readers have talked about the problematic racial elements present in Divergent author Veronica Roth's latest novel, Carve The Mark. Young Adult author Justina Ireland wrote about the damaging content in Carve The Mark and the now-postponed release The Continent. Readers on social media have carried on that conversation and as ARCs poured out into the world, some blogs even declined to include them in giveaways. Carve The Mark seemed poised to be the most problematic, rejected YA offering of 2017.
But Roth just had to go that little bit further.
In an interview with NPR, Roth explains that novel takes place in a world where once a person reaches adolescence, they receive a "gift" or special talent:
"Well, Cyra's is that she experiences constant pain, and she can also give that pain to other people. So the theory is that the current, which is this kind of energy that is present in the galaxy, that it flows through each person and their personality is like a mold that shapes how it comes out. And for her, it would take a lot of psychoanalysis to figure out why she thinks that she's worthy of pain and that others are worthy of pain but - so she's basically experiencing, like, a supernatural form of chronic pain."
Roth explains that she was inspired by friends who have endometriosis:
"And for me, the importance of it came from I had several friends who experienced chronic pain over, you know, like, a decade and were - had their pain underestimated by doctors, which statistically is more likely if you're a woman by, like, a drastic degree. And they were eventually diagnosed with endometriosis. This is like a couple of people just in my immediate social circle. So I thought about them a lot, about how pain takes over your life and limits your potential and how difficult it can be to find someone who'll take it seriously."
As a woman disabled by chronic pain from Fibromyalgia, I can absolutely back up Roth's assertion that it's difficult to find someone who'll take it seriously. From doctors to family members, from "we all have little aches and pains" to "you should try [suggestions ranging from quitting gluten or doing yoga]," chronic pain patients are at the mercy of a society that doesn't quite know what to do with us. Many of us don't have visible signs of disability ("You don't look sick!"). Some of us use mobility aids ("Wheelchairs are for people who are actually handicapped!"). Some of us have employment outside the home ("If you can work, it can't be that bad!"), but others are housebound ("You'd feel better if you got out more!"). Getting anyone to listen to us when we share the reality of our lives seems futile ("Why are you focusing on how bad you have it? Try to be more positive!"), and we often feel like we talk too much about our pain. Since our resources and physical energy are limited, it's often easier to suck it up, suffer in silence, and let ignorance slide.
While many men suffer from chronic pain conditions, their challenges are often different from women's. Western culture constantly equates women's suffering with something positive. We're "strong." We're "warriors." We "fight." But we're never, no matter what our circumstances may be, allowed to resent that suffering or wish for it to end. That's not attractive. It doesn't fit the mold. It makes us depressingly human to those who value our martyrdom over our lives, our hopes, and our frustrations. We're no longer inspirational, and if our pain can't benefit or, in the case of Carve The Mark, entertain people who want to be allies to the disabled, it's just a bummer.
I don't know how Roth's friends with endometriosis feel about their pain being appropriated to make Roth, an already famous and successful author, more money. I don't care to know because their opinions don't represent every person suffering from chronic pain and won't excuse the harm Roth has caused by depicting chronic pain as a "gift." Maybe Roth's friends have had important, life-changing experiences after their diagnoses and feel that their pain really is a gift. But I would venture to suggest that, based on the social media responses to the interview, most people don't share that view. The notion of suffering as a gift doesn't make chronic pain patients feel better; it makes abled people feel better.
Our pain is not "supernatural." It doesn't embody us with special powers that we can use to heal a divided people. In fact, many women suffering from chronic pain conditions and other disabilities have lamented that we can't be a part of the marches and protests scheduled for January 21st. Once again, women with disabilities will be left out of a movement that should include us and be derided as "slacktivists" because we can't get out and physically march.
Chronic pain can be fatal. People with chronic pain conditions have an increased risk of cardiovascular illness and addiction to opioids or self-medication with alcohol. In an attempt to save us from ourselves, the CDC recently updated its guidelines on the prescription of painkillers; this led to an increased suicide risk in some patients already at high risk. Yes, there is a need to take us more seriously. A white-savior YA novel where chronic pain is treated as a supernatural power is not going to accomplish that; it will harm us.
My chronic pain caused me to miss the first two years of my daughter's life. Those memories have been lost in a haze of painkillers and cocktails of prescriptions that were meant to make me functional and only succeeded in robbing me of my life, my career, even my home. And now Veronic Roth has appropriated-for personal profit-my experience, her friends' experiences, the experiences of millions of women who would do anything to be able to return their "gift." We just can't find the damn receipt.
But we have receipts on you, Veronica. Mountains and mountains of them. And gosh, we just don't have the supernatural energy to climb over those to get to the bookstore on release day.