Incoming diabetic sensitivity reader commentary ahead. From the perspective of someone who has been T1D for half her life and involved in the diabetic community. Head's up, it's a long one, with receipts. TLDR: fuck you, Hazelwood.
This book is shameful. That's a strong start, yes? It's disheartening and hurtful. This book does not appear to have been touched by diabetic and disability sensitivity readers at all. Hazelwood does not credit any sensitivity readers -- only "anonymous authenticity readers" which for all I know is fact-checking her physics.
T1 diabetics get excited when T1 diabetes is represented in books, movies, media. It's so rare for us to make an appearance despite existing in and around an ableist society. And 9/10, we are disappointed but still happy to have some sort of representation, even when it is very, very poor. Reader, I am tired of being happy over a few breadcrumbs of bad representation.
My receipts on why this book should not have been published:
We open with her "passing out" from a high. You do not pass out from a high unless you have been that high for a very long time -- certainly not from a slice of cake. And you'd be in diabetic ketoacidosis and in the ER for several days. It is more common to faint from a low sugar. This is Diabetes 101 and this misinformation is in every media featuring a diabetic. I am tired of diabetes being used and appropriated as a convenient plot device.
"I've kicked off the red dress [...] pacing in the glory of my thigh highs, striped cotton underwear, and insulin pod." Elsie has an Omnipod, the only tubeless insulin pump on the market (not ever named but there is only one.) The Omnipod only works with the Dexcom. Dex is a continuous glucose monitor (CGM) which can link to you insulin pump and provide updates on your glucose to your phone every 5 minutes. Your pump can use that data to adjust insulin amounts. Elsie does not have a CGM on her body. She never tests her sugar and does check her phone for glucose updates -but- she is not wearing a CGM. Culturally, there are all sorts of in-jokes among pumped diabetics about "naked" showers, when your pump and CGM expire at the same time and you remove both from your body. We are constantly aware of these devices connected to us, to the point that it is a level of note and celebration when we are not, so it sticks out that Elsie does not have a CGM. In fact, Hazelwood seems to imply that the Omnipod is a two-in-one-deal, that it can also monitor her blood sugar, when no insulin pump can do that.
"It's one more year in the adjunct pit. No research time. [...] Rationed insulin." Hazelwood casually mentions rationed insulin here. Doesn't break it down, doesn't emphasize how fucking dangerous that is. Many diabetics absolutely have to ration insulin when they cannot afford or access it but it is the very last option. Why? People die every year from rationing insulin. It is not a joke, it is not something to be casually thrown out there. In fact, Elsie is thinking she can ration insulin for a whole year -- honestly impossible. She would be in the ER and dead. Hazelwood doesn't mention Elsie relying on doctors to smuggle her insulin samples, of asking diabetic friends to lend you their excess stash, of the underground groups that exist to provide people insulin, which are all very real options.
Elsie is constantly trying to hide signs of her diabetes. Look, we've all been there. Society shames us for being disabled and makes uncalled for comments. But she's nearing 30 and should have big-girl pants on about her disability at this point. She's interviewing at fucking MIT, which, my diabetic friend Vera noted is one of the groundbreaking places for pump technology in their biotech departments. She should know this, as a scientist and a diabetic, and be pumped about it!
"My glucose monitor looks fine, but I want to check my pod." Elsie is experiencing symptoms of low sugar but her (nonexistent) CGM is reporting she is fine. The next step is NOT TO CHECK YOUR PUMP but to pull out your meter and test strips to verify your CGM is correct. Pumps do not "malfunction" like she later claims, causing low sugar. Low BS is caused by user error. If it were HIGH on the other hand, that would be a sign of the pump site failing, tubing closed, or old insulin. And what is she going to do, to check her pump? Touch it? All of her settings are on her phone.
"My glycemic levels" Nobody calls them this. Nobody. Glucose, blood sugar, BS, sugar, high, low. You do not have to incorporate scientific terms in a STEM novel to show off. I had an out of body experience when I read this line again and again.
"My blood is 0 percent sugar" Elsie says this during a low. Technically incorrect, she would be unconscious and dead. I give it a small pass for having strong emotional reactions while low, that's 100% true when it is bad.
"Blood sugar's under seventy milligrams" Girl. Nobody says milligrams. Just 70. And 70 is NOT THAT BAD. Low, yes, but not passing-out-level low. I don't give a pass for how quickly she recovers and can speak cohesively as soon as she's sipped a soda. A low as bad as she describes needs at least 20 minutes to feel like she's not dying.
"Glycemic attacks" WHAT ARE THESE? LOW SUGAR? WHO CALLS THEM THAT? NOBODY IS ATTACKING YOU.
"But paying for insulin out of pocket for one more year..." HOW RICH ARE YOU, ELSIE??? OR HOW STUPID ARE YOU? Insulin is ~$900 a vial without insurance or not in a state that caps it at $100/month. She would need 2-3 vials a month. On top of her hella expensive pump and CGM supplies (nobody ever talks about this when we talk about access to insulin. Cheap insulin would be great but it's a fraction of what I pay for pump/CGM supplies.) I'm talking THOUSANDS a month, without insurance. And there are options! Why isn't she on Obamacare? Why isn't she in any pharmaceutical discount programs (insulin manufacturers will provide discount cards, I've used them when I didn't have insurance!) The fact that she debates abandoning a job interview because she superficially hates one of the panelists is so fucking out of line for a diabetic in desperate need of insurance. AND THERE IS NO COMMENTARY ABOUT HOW FUCKED UP THE HEALTHCARE SYSTEM IS AND THE PHARMACEUTICAL-MEDICAL COMPLEX. Hazelwood, you are in a position of power, thousands of people read your books, if you want to appropriate our disability for dramatic device, pay it forward by actively criticizing the system.
Readers, let's talk about sex. Elsie skips and delays meals during their day-long sexcapades. 1) She needs regular meals, to prevent lows and 2) sex = exercise = low blood sugar. The amount of times we've had to break for a juice box break are uncountable. But none of this ever happens in the book! Bizarre for a male love interest who is so entrenched in mothering her! Additionally, sex with diabetics can be kind of a big thing in relationship early stages. A lot of communication is needed about low sugar but also how to handle our bodies as they are connected to this technology. Elsie mentioned her terrible ex forced her to remove her pod during sex -- an incredibly abusive action -- but that would also cost her a shitton of money, as she would have to completely replace all the pieces again. You can't just reapply and insert a pump once taken out of your body. The sex was so unrealistic from diabetic experience. I sure hope some readers enjoyed it because I could not.
In short, shame on you, Hazelwood. Shame. I acknowledge no single diabetic experience is the same, but it shares a strong culture with all of the things we do find in common, as we bond with diabetics and compare experiences. It's isolating to be a diabetic and I'm incredibly grateful for the support I've had from my diabetic community. We have a culture: we have language, we have values, we have norms! And Hazelwood clearly did not do the in-depth research to see this. Hell, I've had non-diabetic friends follow diabetes meme pages for me, so they could immerse themselves in understanding my life. It's not hard!! So it is disappointing and shameful to see a STEM author, who will be read by thousands of people, put out misinformation about diabetes that we will continue to have to fight and spend our limited spoons correcting.
My dream for diabetic rep in media: 1) we're not used for dramatic plot devices 2) our every day, all the emotional labor we do to stay alive, is integrated fully and correctly 3) it's not explained didactically for non-diabetic readers, I don't want to have a glucose levels or pumps explained to me, if you don't understand it look it up 4) it is a platform used to advocate for universal healthcare, dismantle the capitalism that kills people, and illustrate deeply the tears and stresses of insurance 5) cultural representation of the diabetic community.