Think of this like war movies that want to show their characters traumatized or hardened by the violence they've witnessed, only the actual on-screen fighting is choreographed, stylized, and 'cool' in a way real fights/wars/battles never are. The emotional arc--and, arguably, the plot--of The Fault in Our Stars is Hazel's journey of self-discovery as she deals with how her cancer affected her and those around her, including Augustus Waters, another teen cancer survivor with whom she falls in love. The book contains many frank conversations about death and dying. Augustus and Hazel's love story is tragic because they have only a limited amount of time together. Experiences like a first kiss, a picnic, and even climbing a staircase are serious and significant because of the rareness of such "normal" experiences in the lives of teens with cancer, and because of the physical and occasionally emotional labor Hazel and Gus exert to do tasks that are second-nature to "normal" teens. When the story wants to deal an emotional punch, we get the nitty gritty details of, for instance, walking up a staircase with an oxygen tank. But the embodied experience is only explored when it's convenient for the story--it exists to create angst, not a realistic portrayal of the embodied experience of living with a physical disability.
To give credit where credit is due, this was something I completely overlooked until a friend of mine, who had leukemia as a teen, pointed it out and gave some specific examples. One is Hazel and Augustus having sex. I hope it doesn't have to be said, but obviously amputees and people with lung diseases have sex. The thing is, there's a privilege in being able to spontaneously* engage in sex with no pre-planning or preparation. No making sure you've taken or not taken or adjusted your medication so you can enjoy the experience. No thinking about the logistics of making sure your positions and actions won't cause potentially severe injuries. Above all, no counting spoons. (If you haven't heard of spoon theory, read this now.) No calculating what things you might not be able to do later (cook dinner, drive to the store, go to work, paint your kitchen, etc) because you've expended a significant amount of energy having sex.
Of course everyone's experience with illness and disability is different. Some people with disabilities are able to be totally spontaneous when having sex or bowling or walking the dog or whatever. Some people without a disability need to carefully plan sex (or bowling, or whatever) beforehand, because that's what works for them emotionally. The real issue is that Hazel and Gus's physical disabilities are only explored when it's convenient for the narrative. Hazel's going to climb to the top of the Anne Frank house? In-depth description of her struggles to breathe, her exhaustion, etc. Gus is a bad driver? Well, that's played for laughs, so we won't go into the physical complexities of him driving with a prosthetic leg.
The movie is even more problematic in this regard, even before we get into the issue of casting able-bodied actors to play disabled characters, but this article explains it pretty well so I won't get into it here.
*I know they discussed it beforehand, but the moment itself happens pretty organically.
2. The novel simultaneously mocks and uses inspiration porn.
Inspiration porn isn't real porn. I mean, I'm sure there's something, because this is the internet. But in this context, inspiration porn doesn't (typically) involve sex. It's those stories you see shared on Upworthy and similar sites. It's the state champion wrestler who "let" the kid with downs syndrome win the final match of the season. It's the head cheerleader who asked the boy with autism to prom. It's the woman who decided to record the girl using ASL with a deaf man on an airplane. It's the gee-look-we-gave-this-person-with-disabilities-something-they-might-not-have-even-wanted-in-the-first-place. Above all, it's the proverbial back-patting that occurs when other people read or watch the incident, treating the person with disabilities like a prop or a zoo animal. It's the good feeling that comes with watching a "normal" person deign to help out a "non-normal" person.
To be clear: helping people (disabled or able-bodied,) isn't necessarily bad. It's the turning it into a whole performance that's a violation of personal autonomy and dignity. For instance, the girl on the airplane wasn't doing anything wrong. Flight attendants asked over the PA if anyone knew ASL and she volunteered. It's the person who decided to take pictures and then share those pictures all over social media. It's the news organization that decided to print the girl's name but never bothered to find out the name of the man. (Here's another way this story could have been written: "Man Fluent in ASL Helps Student Practice; Helps Both Pass Time on Boring Flight.")
In The Fault in Our Stars, there are some good passages where Hazel explains how she's been given toys and things because people pity her. That's a good critique of inspiration porn. It shows, from the point of view of a disabled person, how demeaning and just plain annoying it can be to be treated like an oxygen tank (or wheelchair, or cane, or whatever) is your entire identity. Less good is the crowd applauding when Hazel climbs the stairs in the Anne Frank House. (Others have called this disrespectful, I don't feel I have the expertise to engage meaningfully with this critique.) Here's the problem:
"On a superficial level, it’s a positive thing to be considered inspiring – until you consider the implications.
When you tell someone with a disability or someone who is otherwise perceived as disadvantaged that you find them inspiring, you are essentially saying that you would find their way of life insufferable and wouldn’t be able to cope if the roles were reversed.
While it’s meant to be a compliment to perseverance, it’s not exactly the best way to raise someone’s self-esteem or general outlook.
Yes, people with disabilities often face more challenges, and their accomplishments should be recognized, but don’t condescend us.
Please stop pretending to be humbled by passively perpetuating our oppression in allowing the ableist status quo to persist." (Erin Tatum, Everyday Feminism)
Same problem with "Fun" activity: watch this video about the premiere of The Fault in Our Stars and count how many times the word 'inspiration' is used. "It's inspiration that sold out the theaters this weekend," Voiceover Man tells us. And that's exactly the problem. For all it critiques inspiration porn, that critique is undermined because the critique (namely, Hazel's sarcastic narration,) becomes part of what makes her inspiring.
3. There's some serious issues with consent.
I want to acknowledge that the sex scene in The Fault in Our Stars has been praised as a good example of explicit consent. My problem isn't that conversation. It's the larger context of what's unsaid before that scene ever happens.
Here's the thing: the question of consent in this novel is fairly unique and specific. If it had been explored or even acknowledged, it could have added some depth and nuance to the story. As it is, though...
The consent I'm talking about is Hazel and Augustus having sex before Augustus tells Hazel his cancer is back, and it's terminal. The problem isn't so much Augustus choosing not to tell Hazel, it's him choosing not to tell Hazel after she explicitly expressed her reservations about people with terminal illnesses starting romantic relationships. Yes, when she says "I'm a grenade" to explain why she doesn't want to start a relationship with Augustus she's talking specifically about herself. But her feelings, however flawed (or ableist) are still made clear: she doesn't want to expose anyone to the emotional trauma of falling in love with her only to lose her. She only changes her mind when Augustus makes it clear he understands the emotional risk he's taking and assures her he's making the deliberate choice to be with her even knowing he may soon lose her.
He doesn't give her the same choice.
Again, if Hazel hadn't expressed this sentiment, I don't necessarily think this would be a problem. I'm not an expert on consent. I'm not an expert on the complexities of having a romantic relationship with someone with a terminal illness. But as long as you're not endangering someone, I don't think you should *have* to reveal a life-changing medical status to someone before having sex. At the very least, having never been in that situation myself, I'm certainly in no position to judge.
The problem is, Hazel expressed some very real reservations about starting a relationship between a terminally ill person and a non-terminally ill person. Doesn't necessarily mean she's right. But it does mean she has a right to be fully informed before entering into any kind of relationship, especially sexual, with someone who knows her feelings. It's not done with malicious intentions, but Augustus gaslights Hazel. He lies about why he and his parents were arguing. He (and her mom) deliberately don't tell her that he discussed his illness with her parents. When she expresses concern when he seems weak/tired/etc, he deflects.
From what we know of the character, I suspect Hazel would have still chosen to have a relationship, including a sexual relationship, with Augustus had she known of his status beforehand. But she doesn't know. The truth is deliberately hidden from her until after they have sex. We can speculate all we want, but ultimately all we have is the text and the text does not give Hazel the choice. I highly doubt this was Green's intent, but Augustus doesn't give Hazel the same information, honesty, and chance for explicit consent that she gave him. The fact that it results in sex just makes it more unfortunate.
Okay? Not Okay.
Here's the thing: I am definitely the wrong audience for this book. I don't like romance. I don't like realistic fiction. I'm not even a huge fan of YA--I'll take YA over books for adults, but my true love is Middle Grade. I also had the benefit(?) of having three different friends--one with a chronic illness, two cancer survivors--introduce me to the world of disability criticism and explain why they disliked movies like A Walk to Remember, My Sister's Keeper, and Beaches before I ever read The Fault in Our Stars. (By the way, I don't mean to lump my friends together--they each had a very different experience and a very different perspective. The previous sentence is just a cliff notes version of their thoughts, opinions, stories, drunken ramblings, scathing sarcasm, and in one case, scholarship.)
Point being, I was primed to approach stories about characters with disabilities, especially terminal illnesses, with a lot of skepticism. So, yeah. I'm a giant curmudgeon when it comes to The Fault in Our Stars. But I think it's an exemplar of the way disability and/or illness are often treated in popular culture--and that needs to change.
Resources/Further Reading:
Crip the Vote/The Disability Visibility Project: huge group that promotes political and social activism, disability rights, and supports the groundbreaking idea that stories about people with disabilities shouldn't almost exclusively be told by the able-bodied.
Human Rights Watch: Disability Rights: contains tons of reporting, opinions, scholarship, and opportunities for activism not just in the United States but around the world.
The Facebook groups Teaching Disability Studies and, of course, Disability and Chronic Illness in Young Adult Literature
There's a ton more out there, but these are good starting points.
-Cates
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