TFiOS Chapter 3 - Summary and Impressions So Far (Part 5/5)
What is becoming clear more and more – perhaps more in this chapter than the previous two – that, more than a ‘cancer story’, The Fault in Our Stars ought to be recognised as a ‘disability story’. That is, as a result of her cancer, Hazel is a sixteen year old girl whose greatest obstacles aren’t whether or not she will ace her final and qualify for the career she’s always dreamed of, but being able to breathe with the help of her apparatus and whether or not she will have the energy to do anything she wants to do. It’s for this reason, as well as the fact that cancer is often categorised as a chronic illness, that I consider Hazel to be a disabled character.
For the record and use in reality, I believe it’s best to refer to someone who has disabilities as a ‘disabled person’ rather than ‘handicapped’ (or ‘handicapable’) or as ‘someone with a disability’ – using ‘identity first’ language rather than ‘person first’ language. I don’t speak for every disabled person by any stretch, but this preferred form does recognise the fact that someone’s disabilities are a part of their identity without extending undue pity or insinuating that you want us to be cured of our disabilities or that they are somehow separate from our being. I know I am attempting to condense what is a complex conversation, one full of nuance when it comes to the social dynamics that have to be traversed as a disabled person. Our community is diverse, and we all have different prejudices to deal with in that respect. In other words, playing the ‘who has it harder’ game is both impossible and doesn’t actually help anyone; one person’s ‘hard’ is another person’s ‘easy-peasy’. With this in mind, the conversation in disability will be an ongoing one for this book. This isn’t ‘finished’, this is ‘just for now’.
Considering this summary is focused on a fictional character, here is a note for actual day-to-day practice: different people use different labels in regards to disability, and my labels aren’t necessarily the ones another disabled person will use. However well you know someone, if they identify as disabled, don’t challenge them. They know who they are and what they are talking about.*
Again, this is simplifying a far more complex issue. The disabled experience is characterised by living in a society that prioritises the able-bodies and neurotypical. Just two distinct flavours it tends to come in are: 1, ‘Disabled people are inherently inferior’, in which able-bodied people basically decide that anything short of conforming to the physical and neurological standard they have set is grounds to decide that you are not worthy of life, respect, or dignity. 2, ‘Disabled people are my inspiration’, in which the idea of being disabled is so repugnant and tragic to the able-bodied/neurotypical that seeing a disabled person carry on and live their life anyway means that person must be ‘so strong’ and ‘brave’ when all they did today was buy milk. This second flavour, while seemingly positive, finds disabled people inspirational because the disabled existence (whatever that means) is seen as burdensome, and ‘worse than death’. It is also objectifying.
What happened in this chapter with Hazel, to me, seems to be a mixture of the two. First, let us get down the facts we know:
As a result of the cancer Hazel is currently in remission from, she has difficulty breathing – which is shown visibly with the apparatus she carries around – and she has chronic fatigue. Not only that, but she also has depression.
These conditions weaken her physically and – as acknowledged many times in chapter 2 – can make her vulnerable. That is no surprise: in the US, disability is an intersection that can make a woman or girl three times more likely of being assaulted. Highlighting her vulnerability in comparison to Augustus, who could take advantage of that, is disturbing enough.
She considers herself, as a result of her illness, a burden on her parents (who in turn are only defined by the functions they provide as caregivers). This is damaging considering society labels disabled and neurodivergent people as burdens by default.
At this moment in time, in chapter 3, she was reading her book at the mall when she is disturbed by a little girl asking her ‘what’s in your nose?’, referring to the cannula she uses to breathe. While yes, Hazel seemed to be fine with the interaction in which she acted as a teachable moment, you can typically guarantee that most disabled people won’t be. We’re busy.
Ableism doesn’t just exist as abled people denying disabled people access and support. It can also exist in moments of entitlement like this where abled people decide that now is the time they’re going to ask a disabled person they don’t know about their origin story, now is when they’re going to waste a disabled person’s time and energy to get information they’re not entitled to, now is when they are demanding an education from someone who is not even getting paid for it. It’s objectification to treat people like a means to your own ends. If this idea doesn’t make sense to you, compare it to what typically happens when a cis person finds out that someone is trans: regardless of how well they know them, they end up asking about genitals and surgical procedures. Just as it’s cis entitlement to demand such personal information from a trans stranger, it’s abled entitlement to demand such personal information from a disabled stranger.
And this is the problem about this scene: as a disabled main character, the worry here is that her experience is being treated as the quintessential experience. Yes, Hazel calls herself a ‘professional sick person’ and throws other teens like herself under the bus if they don’t suffer to her standard, but Jawn is setting her up as the representative of all disabled teenagers. By having her be perfectly accommodating in such situations as this one, in which she is being called upon by a child to sate her curiosity regarding her disability while the girl’s mother fails to teach her daughter that disabled people don’t exist as teachable moments or Disabled Google, my concern is that Jawn is setting up an expectation of his readers to treat the disabled people they meet as Disabled Google as well. My concern is that readers will see her accommodations and attitudes as a disabled person and expect every disabled person to be such an inspiration.
We have better things to do than explain to an abled person how and why we’re disabled just because they asked. We have better uses for our energy and for our time than educating anyone who asks or giving strangers our origin stories.
*Yes, there is this idea going around – and this is particularly prevalent in the UK – that people who claim to be disabled are actually faking in order to get welfare payouts, but this actually happens far less than you think. For one thing, the steps one has to go through to apply and qualify for disability welfare are hard enough for the disabled people who need them, and most abled people won’t commit to such a difficult application process just to scam the government. Getting the abled public to label all disabled people as ‘fakers’ and ‘phonies’ helps governments and various organizations get away with drastically reducing welfare for disabled people and ignoring bills and laws on accessibility and equal opportunities.
ellievsbear
pixelskylines
prguitarman
jbbartram-illu
stormborns