When Representation Lets you Down
I finished Lycanthropy and Other Chronic Illnesses last night and wondered if maybe I was being a jerk, or was too sensitive.
To be clear: I loved the premise, it's a solid book, it just takes a left turn in representation towards the end.
There will be spoilers after this point for both this book and More Happy Than Not. CW: Ableism, Suicide, Court / Trials, and so on. Some of it is in the books, some of it is about me.
Anyway the premise of this book is that a girl (Priya) who has to give up on Premed and Med School because she gets Chronic Lyme Disease, and joins an online support group and finds out her best friend's chronic illness is transforming into a Werewolf.
I never realized I was Chronically Ill until I looked up the definition on Wikipedia and found out that both Autism and Migraines count as Chronically Ill (if you stop to think about it) and getting ECT treatments permanently probably also puts me there, so I was like “Oh maybe this will soothe my wounded, disabled heart.”
To be clear: The Author is chronically ill though she does not have Lyme disease (and is presumably not a werewolf) so this is NOT a “Stay in your own lane” sort of thing. But let me lay out my problems, don't worry, the Lycanthropy is solid, no complaints about that in fact I'm barely going to talk about that:
Priya is naturally discouraged as she's doing badly catching up in school. She figures her dream is hopeless. I can certainly relate. For those that don't know, I was trying to get a doctorate (not just for gender reasons) and become an academic researcher. Academia fucking Sucks so while I am sad I could not achieve my dream, I also feel it is a bullet dodged.
The problem is, towards the end of the book, her father comes up with articles about Disabled Doctors and ideas for how to get through Med School while Chronically Ill. It does not go into detail about compromises she'd need to make, or basically what this will entail. But she can do her dream! Isn't that great?
Since O'Neal has Chronic Illnesses and would presumably know of the plausibility of a med school course-load while chronically ill, I suspect the book originally had a different ending, and she was told to make it inspirational. To be clear, I am going to believe this until I have irrefutable evidence otherwise because I genuinely want to believe it's someone else's fault this book takes the “Inspirational ™️” turn it does.
I talked a bit in this post about Americans with Disabilities Act Accommodations and how virtually toothless it is.
Let's use an example of Sidewalks: Oh what's that? Cities were told the one thing they had to do was make the Sidewalk ADA-compliant next time it was under construction, and has failed to do that for at least 30 years? You don't say! Like, this is a legitimate problem, I know people in wheelchairs who have gotten stuck or hurt on these badly designed paved sidewalks and parking lots.
To go back to my court case (the one where it was thrown at me that I had gotten an A in the one class I was taking at the time because it “sounded like a difficult class” so therefore I couldn't be disabled), there is an expert in ADA at these disability hearings. The Judge asks them if it'd be a “Reasonable accommodation” for a workplace to do X. Like, to allow breaks in a dark room if you have a migraine twice a week. Nope. To explain things differently? Not really. I'm lucky in that I don't use a wheelchair, so the bullshit I deal with in transportation isn't nearly as bad as people I know's.
Maybe she did research, and California (where Priya went to school) or New Jersey do a lot better jobs with accommodations? Kind of doubt it since Los Angeles was named in that article above. I mean, to be clear: while I am grateful for the accommodations I got in school, I did not get as many as I should have. I couldn't even get a notetaker for class. And it's not just a Nebraska problem. I tried to go to grad school in Canada. My accommodations weren't any better.
This is part of why I do not have a job. I am considered a “Discouraged Worker” because I know there's no point in applying because no one will accommodate me.
Maybe I'm just bitter because I had to give up on my dream.
Now let's discuss the other book. If you were not aware, it's about being able to block out memories and rewrite your life's narrative. You find out the protagonist manipulated his memories to forget his father's suicide (and he the protagonist's homosexuality, which sort of drove the former) and then he remembers, tries to undergo the memory treatment again, and due to head trauma from assholes, he starts having problems with his memory. I'm pretty sure when I last took notes about this, it was called Anterograde Amnesia.
The original book ended with him preparing to acclimate to his new life. It was a downer, sure (but most of Silvera's books are), but for like the 10th anniversary they put out a new edition with a new ending. In which he gets medical treatment after a year to fix his brain problems. I do not have Anterograde Amnesia, admittedly. I have Retrograde —Caused by ECT-treatment, maintenance ECTs to be specific. Like sure, the first summer I underwent the treatment is basically gone other than 2 memories, but I STILL lose memories because I get the treatment once a month. It is easily the most impactful thing (short of the pandemic) on my life. This was the closest thing to representation I had and it was taken from me.
See. I don't want to disappoint young readers (or the adults reading YA) but Miracle Cures in Fiction will not help your disabled audience. It just makes us feel shut out.
Like, this is another one I have a conspiracy theory about. I think Silvera was pushed to write a happier ending.
I am not saying you have to kill off your disabled characters, but wheelchairs, for example, go back centuries further than you may have imagined.
Neanderthals Cared for the disabled we know this for a fact: We've existed the whole time. Why does our society just want to brush everyone disabled under a rug and pretend we don't exist? Why are we only there to make the reader sad? Why can't we have stories where the disabled reader feels empowered without it ringing false?
My Creative Writing Professor once said (in a class I wasn't at because I was at a medical appointment) that Disabled People cannot be the protagonists of stories because they lack agency. But all I've wanted in the last decade is to write myself some representation. Do I completely lack agency? I don't think so, that's part of why I'm writing this blog post.
I'm not saying we need 100 Copies of Sick Kids in Love, I want 100 other disabled stories, but it's the only one I can think of in recent memory (remember my memory issue) that I didn't feel betrayed by in representation.
Yes, the answer is both ableism and capitalism.
Please remember, disability is a marginalized-status that anyone can join at any time in their life. Even if you are not currently disabled, that does mean you won't be later.
Also remember: I will not join your revolution if you don't give a shit about disabled people. If we just simply have to die for your revolution, honey, that's eugenics.
Anyway, if you'll excuse me, happy Disability Pride Month, Happy Disability Wrath Month, and I'm going to read Sick Kids In Love again unless someone can recommend just as good or better representation.
Feel free to at me on the Fediverse, please provide context though.