Rant: On Veronica Roth & Chronic Pain

So you might be asking, what exactly is strong enough to pull me out of my blogging-block at 12:30AM on a Tuesday? Turns out, ableism. Too much of it, in fact.

Disclaimer: I haven’t read Carve The Mark. All opinions are derived from articles, the below interview, and other info found online.

You may or may not have seen (or heard) the interview recently published on NPR Books that features Veronica Roth discussing her new book, Carve The Mark,  with Scott Simon. Here’s a little preview:

I’ll admit, I haven’t been following the release of the book much since I heard it featured harmful racist tropes. I’m of the opinion that when one marginalized group tells me (an outsider to that group) that something is discriminatory, I should take their word for it. I don’t need to investigate for myself. I don’t need to read it to ‘prove’ their claims. Because of this outlook, I’ve stayed on the sidelines of a lot of discussions about diversity in books. I fully support it, but I also know that it’s not my place to say anything besides words of support.

Not now.

I’m not overtly private about the fact that I struggle with chronic pain and suffer from certain autoimmune diseases. I don’t advertise it often, but if someone respectfully asks me about it, I’ll explain. It’s a part of me, and I’ve had to come to terms with the fact that it’s not going away. It’s been nearly two years since it all started, and those have been the most difficult two years of my life.

And in her book, Veronica Roth actually has the gall to treat chronic pain as a ‘gift’ of sorts. The NPR interviewer also said this:

Excuse me, but if you’ve never experienced chronic pain, you don’t get to say shit like this.

All I can think of when I read this is that godawful fairy in Ella Enchanted, who gives Ella the ‘gift’ of obedience – and then she spends the entire movie trying to get her to take it back. Ridiculous, no?

My inability to get up in the morning is not a gift. Not being able to work, go to school, see my friends, live on my own, be ambitious, have energy, exercise, all that is not a gift. Having my life continually disrupted because my body has decided to stop working properly is not a gift.

This is, to me, very much like saying a loved one’s death is a gift. Yes, you become introspective about mortality, your values are reinforced, maybe your relationships with others are strengthened because you’ve been reminded of how short life is. These are positive things to take from an inherently negative experience.

Chronic pain/illness is very much the same. I have grieved for the life I no longer get to live. Have I become more grateful for some things? Sure. But I wouldn’t count that as a gift. I’d say it’s putting a good spin on a bad situation. I have no other choice.

Roth also goes on about how she wanted to showcase her character’s “strength,” which stems from surviving her suffering.

To an extent, I understand the good intention behind this message. She wants to honour her close friends who’ve dealt with chronic pain by creating a character who exhibits the same sort of “strength” those women did.

But this is the problem with any kind of illness-narrative. The need to be inspirational is more important than the need to be accurate and authentic.

Sure, people who suffer from chronic pain are brave. But they’re also angry. And they’re sad, and frustrated, and a lot of it is just as ugly as their bravery is beautiful.

For me, as someone who’s always turned to books for solace, I’d never seen this portrayed in illness-narratives. So when I began to get sick myself, I started to wonder why I couldn’t just be brave. I’ve learned since that that’s not how strength and bravery works.

So, being portrayed simply as “strong” isn’t enough for me. I want complexity. I want to see chronically ill characters who are angry, and happy, and sad, and confused, and frustrated, and most of all, still human for it all.

Glorifying and putting chronic pain on a pedestal is no better than tearing us down and writing stories that basically claim we would be better off dead. It portrays illness as a plot device used to tear-jerk the reader. I reject that I have to be either an inspiration, or a sob-story. I am so much more complex than that, and I expect chronically ill characters to be written complexly as well.

One of the best only examples of accurately portraying the ugly side of chronic illness in a fair way *that I’ve read* is in (don’t hate me) John Green’s The Fault in Our Stars. Spoilers ahead.

---

“He was crying. I’d never heard him sob like this”

“‘I wanted…to do it myself. Do one little thing myself'”

“‘I hate myself I hate myself I hate this I hate this I disgust myself I hate it I hate it I hate it just let me fucking die'”

“According to the conventions of the genre, Augustus Waters kept his sense of humor till the end, did not for a moment waiver in his courage, and his spirit soared like an indomitable eagle until the world itself could not contain his joyous soul…But this was the truth, a pitiful boy who desperately wanted not to be pitiful, screaming and crying, poisoned by an infected G-tube that kept him alive, but not alive enough”

---

Although the film adaptation greatly downplayed this scene, John Green realizes here that the glorification is a lie. It’s told by people who aren’t sick, to make them feel better about the fact that the sick are sick. Sure, it’s nice to get some credit for the fact that you’re suffering so much, but writers, of all people, shouldn’t do us the disservice of pretending that’s all there is to see.

So. I haven’t read Carve The Mark. I’m not sure that I will, but I know it’s the first in a series. My hope is that Veronica Roth writes this character complexly, and if she doesn’t achieve that in this book, then she should take some notes, do better research, and try to do better in the next one.

2/ If you portray the strength of people with chronic illness w/o also portraying the ugliness & frustration of it, it's not accurate at all

— emma kath (@ekcullen) January 17, 2017

4/ If I've learned anything, it's that bravery happens w/o much intention. It's what happens when you just keep going, and ppl glorifying it

— emma kath (@ekcullen) January 17, 2017

6/ We're so much more than some 'inspirational' story to cry over while secretly being thankful ur not us. We're complex, rep us that way.

— emma kath (@ekcullen) January 17, 2017

I’m absolutely happy to answer any questions about chronic pain, and discuss this issue with you further! What do you think about Carve The Mark? Have you read it? Are there any well-written books with chronic illness you’d recommend? Let me know in the comments!

---

UPDATE: 01/17/17 5PM: Veronica Roth spoke about the problematic treatment of chronic pain in this interview with another interviewer on USA Today a few hours ago. It’s around the 10-minute mark (click here or the link above). She spoke against the previous interviewer’s claim that chronic pain is a gift, which I appreciate. She also said that she made a point not to ‘magic-away’ the character’s chronic pain, which I’ve talked about before, and doubly appreciate. I think I’ll need to read this book to get the best grasp of its treatment of chronic pain, which may yet be a while into the future (I’m not buying it, so I guess if I do read it, it’ll be a library loan).

The USA Today interviewer also semi-pressured her to out the fact that she has suffered from chronic pain in the past (which I’m not okay with, no matter whether I agree with her handling of the subject in her book). I still stand by this post, no matter if she’s recanted on certain problematic aspects of the book (the racism has still not been addressed, to my knowledge). I can only hope that she does a better job of representation in the book than has been set forth in these interviews – I still think there’s lots of room for this to go in the wrong direction, and she should definitely acknowledge the racism. Basically, this is a step in the right direction, but she needs to be running in the right direction before I’ll be tempted to shut up about this.