Note: Version with images here. I swear in this post.
A couple weeks ago, I read a Young Adult book called Made You Up, by Francesca Zappia. As a Young Adult, I occasionally feel compelled to read the books that are ostensibly written for my peers and me. About 94% of the time, I later regret this decision. Unsurprisingly, this particular YA book fell within the 94%. Actually, the reason the book was in the 94% was because the main character was in the 0.04%: that is, it was a novel about a girl with schizophrenia, but the symptoms and circumstances of her illness were so improbable that it seemed like the author hadn’t done much more than read about schizophrenia on WebMD in preparation for the project. This is best expressed in list form:
- The protagonist (“Alex”) first experiences psychosis at age seven. She is diagnosed with schizophrenia at age 13.
- Early onset schizophrenia (EOS), which manifests before the age of 18, is estimated to have a prevalence of about 4% among schizophrenics, and therefore 0.04% among the entire population (Kyriakopoulos and Frangou, 2007). Childhood-onset schizophrenia, or COS, has a particularly poor prognosis. Alex would meet criteria for COS.
- Alex’s only symptoms are hallucinations and delusions.
- Schizophrenia consists of positive and negative symptoms. Positive symptoms are exhibited in addition to a baseline “normal” state (hallucinations, delusions, disorganized thought). Negative symptoms are “subtracted” from a baseline state; they are the absence of traits healthy people exhibit (social withdrawal, blunt affect, poverty of speech, avolition). I don’t know how many people with schizophrenia exhibit only positive symptoms; I would assume that that number is very small. Also…
- EOS is generally considered a more severe form of adult-onset schizophrenia. This severity is apparent in neurocognitive deficits; which are recognized as a core symptom of schizophrenia; social/occupational functioning; and long-term prognosis (Cantor et al., 1982).
- Alex goes to school, has a job, and interactions with her friends. She only has difficulties with these during a twenty-or-so-page section of the book where she experiences a hallucination, is “in and out of the hospital for three weeks,” and then goes right back to school.
- EOS patients typically score lower than healthy controls on multiple measures of neurocognitive ability. For example, one study found that EOS subjects had a mean IQ of 85.2 (standard deviation = 14.5), while normal subjects had a mean IQ of 107.1 (SD=10.5) (Brickman et al., 2004). Another study had similar results: mean IQ of 84.8 (SD=17.0) for EOS and 110.0 (SD=8.5) for controls (Jepsen et al, 2013).
- EOS patients tend to exhibit negative symptoms (including blunt affect), speech and language deficits (including language disorders), difficulties at school (more than half in one sample had failed a grade), social challenges (“moderate educational and occupational impairment…in 57% of this sample and serious social disability…in 66%”) (Kyriakopoulos and Frangou, 2007).
Basically, the bottom line is that schizophrenia is not rare, but EOS is, and EOS is invariably a severe form of schizophrenia (which is a serious illness already). Ergo, a girl having EOS with no negative symptoms and being able to have friends, go to school, hold down a job, etc., seems very, very unlikely. And this isn’t inherently a problem – lots of great books are about people who are exceptional in all sorts of different ways (see Harry Potter). But more likely than not, the folks reading this book have little, if any, prior knowledge of schizophrenia, and if they come away from it thinking, “Oh, now I sort of understand schizophrenia,” chances are, they understand less than they think. I actually read through a bunch of Goodreads reviews and found that the majority of them exemplified this risk perfectly.
Our main girl, Alex, has schizophrenia. Before I started it, I had thousands of question [sic]: would the girl play ‘victim’? Yeah, none of that happened. I admire this girl. Yes, she isn’t ‘normal’. She has a condition, and yes, it scares you how much it affects her directly and indirectly. It’s trying to live with the motion of not knowing what/who is real or imaginary. Is [sic] carrying a camer around because in order for you to know if something is real, you check the photos when you arrive home to see if something is different. And at the same time, Alex is so unique, so special, human. You can’t not empathize. It’s like rooting for someone to beat the odds, you know? And there are times when you ‘forget’ her condition, only to be amazingly surprised when she was trying to hide from ‘enemies’ and checking everything around.
What does it mean for a girl to “play ‘victim’?” If she had significantly more disabled by her schizophrenia (as most people are), would that be “playing victim?” Are people with cancer playing victim, too? How about people with allergies? “Enough with the anaphylaxis, Bob! Just suck it up and breathe! Have you tried meditation?”
But seriously, this incenses me. And I suppose the reviewer has decided that the protagonist is not playing victim and is in fact admirable, and that yes, she does have schizophrenia, but “at the same time…is so unique, special, human.” Unlike most people with schizophrenia, who are inhuman? AAAAAARRRRGGGGHHHH. This is the kind of thing that makes me want to rip my hair out. And I can absolutely imagine someone saying, “But that’s a compliment! They’re saying that she has schizophrenia and she’s human! Isn’t that good?” It’s not good, because that’s not what they’re saying. The very thinly veiled subtext is: “She has schizophrenia, so she’s probably totally different from me [at best]/a total psychopath [at worst], but surprise! She’s a person!” I could do a whole post on this alone.
Read this book if you have a soft spot for lobsters, red hair the color of lobsters (she swears it’s not dyed), mental disorders (pssst schizophrenia), unreliable narrators, batshit crazy main characters (in the best sense!)…
“A soft spot for mental illness?” Are you kidding? (I fully agree with Clumsy Storyteller, though…)
And other iterations on this that I’m just going to quote, instead of including the whole screenshots:
- “I loved how the author didn’t feel the need to revolve the plot entirely on the subject of schizophrenia. It was the focus but it wasn’t THE focus. Get it??????
- You might be the one who doesn’t get it?
- “Obviously, I can’t speak for the representation of schizophrenia being accurate. But I can definitely guarantee that it’s empathetic. I would feel comfortable recommending this to any mentally ill person, and that’s more than I can say for a lot of the books in this genre.”
- Okay, first, you don’t know that it’s accurate, but it is empathetic? What does that even mean? Guess I forgot for a minute that this is 2020 and we prioritize feelings over science…
- You would feel comfortable recommending this to any mentally ill person? Maybe rethink that.
- Also: I’m trying to picture the context where you’d be “recommending this to any mentally ill person?” Maybe you have an email list or something?
Dear Mentally Ill People,
Allow me to recommend a book to you. I am a Good Citizen because I read a book about schizophrenia, I don’t hate the schizophrenic character, and now I am telling other people to read the book to Raise Awareness. Just because I don’t have a mental illness doesn’t mean I don’t know way more than you do about the thing that you live with and I don’t. Go Awareness! Remember to wear some sort of colored ribbon during some month for mental health! I don’t know what color or month it is because literally every freaking sickness has a campaign for it now and we are running out of both months and colors! It’s almost like these things are getting commodified! Wait a second…
P.S. The book may not be accurate, but it is empathetic.!!!
- “MENTAL ILLNESS IS EXACTLY THIS.”
- *continuous face palm until every single other customer in the coffee shop is staring at me*
- “I don’t have schizophrenia (or I don’t know I do – shoutout to past me)
- What? No. Stop.
- “so I can’t really speak to whether this book is an accurate display of the mental illness. But, to me, as an outsider, it felt real.”
- Again with the “feeling real!” This is a perfect example of why this book is exactly what we don’t need. 99% of the population knows what it is like to not understand schizophrenia and observe it from the outside. A book that just confirms people’s uninformed beliefs about what schizophrenia looks like, based on the author’s uninformed beliefs about what schizophrenia feels like, is the epitome of counterproductive.
This was a much better way of explaining my reaction:
[begin review] The writing in this book was not at all objectionable, but I have a problem with someone writing a schizophrenic character that has all of the positive symptoms of schizophrenia without any of the negative ones.
Note that positive and negative are not value judgments, just the terminology used to classify different types of impairment schizophrenic peoplehave. Positive symptoms are the flashy Hollywoodized ones–hallucinations, aggressive behavior, etc. Negative symptoms are things like difficulty completing activities of daily living, hygiene problems, inability to interact socially. I understand that a book about a girl who goes to school in her pajamas without brushing her hair might not be something publishers would want, but all schizophrenic patients have some degree of negative symptoms. Therefore, this portray is completely unrealistic and false. Specifics involving the medication regimen and therapist interactions also rang false to me.
I’m giving the book 2 stars because at least it’s not overtly offensive to mentally ill people, but there are lots of reviews where readers are saying things like “I’m so glad this book exists because now I know more about schizophrenia.” No. No you don’t. This book isn’t increasing awareness. [end review]
My one note here would be that aggressive behavior itself isn’t a positive symptom, and it’s definitely not that common. Positive symptoms are delusions, hallucinations, and disorganized thought/speech. Aggression might be a response to or product of these, but it’s not considered a positive symptom. Here’s another good point:
In this book, therapy and medical help are always seen as a punishment, something horrible and awful to be avoided at all costs. no matter how much i enjoyed the plot, i’m so uncomfortable thinking that because of a book like this, someone with genuine issues might have a problem reaching out to a therapist or a professional for help. [end quote]
Plus this School of Rock quote, which is an image of the character Freddy, a short, light-skinned, brown-haired boy saying, “You’re tacky and I hate you” directly to the camera.
I would like to conclude with the review that, of the Reviews With Which Lucy Thoroughly Agreed, Lucy agreed most thoroughly…and it happens to be in Portuguese, so we’re going to have a competition: Lucy vs. Google Translate. I actually translated three paragraphs, but I’m only including one because this post is long.
Original text: Muitas pessoas vão pensar q esquizofrenia é essa doença romantizada do livro, assim como muitas acharam q A Culpa é das Estrelas era uma boa representação de adolescentes com câncer (eu tbm achei quando li o livro, me emocionei bastante. Aí fui ler mais a respeito e…Né.) Mas acho que talvez a desinformação aquí seja ainda pior? [end original text]
My translation: “Many people are going to think that schizophrenia is this romanticized disease in the book, like people who thought The Fault in Our Stars was a good representation of teenagers with cancer (and when I read the book, I got pretty emotional. Would I read it again? No.). But I think there could be more disinformation here? [end my translation]
Google’s translation: “Many people will think schizophrenia is this romanticized disease of the book, just as many thought that Guilt is a Star was a good representation of teenagers with cancer (I also thought when I read the book, I was very emotional. Then I read more about it. and…No.) But I think maybe the misinformation here is even worse?” [end Google’s translation]
I DID IT! I DID IT!
Can we please change The Fault in Our Stars to Guilt Is A Star? So much better. Anyway, the moral of the story is that it’s not going to be too hard for me to learn Portuguese. Also, don’t write irresponsibly about schizophrenia.
Brickman, A. M., Buchsbaum, M. S., Bloom, R., Bokhoven, P., Paul-Odouard, R., Haznedar, M. M., Dahlman, K. L., Hazlett, E. A., Aronowitz, J., Heath, D., & Shihabuddin, L. (2004). Neuropsychological functioning in first-break, never-medicated adolescents with psychosis. The Journal of nervous and mental disease, 192(9), 615–622. https://doi.org/10.1097/01.nmd.0000138229.29157.3e
Cantor, S., Evans, J., Pearce, J., & Pezzot-Pearce, T. (1982). Childhood schizophrenia: present but not accounted for. The American journal of psychiatry, 139(6), 758–762. https://doi.org/10.1176/ajp.139.6.758
Jepsen, J. R., Fagerlund, B., Pagsberg, A. K., Christensen, A. M., Nordentoft, M., & Mortensen, E. L. (2013). Profile of cognitive deficits and associations with depressive symptoms and intelligence in chronic early-onset schizophrenia patients. Scandinavian journal of psychology, 54(5), 363–370. https://doi.org/10.1111/sjop.12062
Kyriakopoulos, M., & Frangou, S. (2007). Pathophysiology of early onset schizophrenia. International review of psychiatry (Abingdon, England), 19(4), 315–324. https://doi.org/10.1080/09540260701486258