lightreads | Entries tagged with disability and illness

Carnal Acts: Essays

4/5. Collection of her work spanning many years. Demonstrating (1) that she gets better with age (who doesn’t?); (2) she knows it and feels a bit squirmy about early work (fair enough); and (3) that I read her differently now. I’ve always appreciated her, but she was on a different track, disability-wise, than I was. Her disease was progressive and mine wasn’t. That changes things.

Now my disease is progressive – was always progressive but has now progressed – whatever. And, suddenly in the past few weeks, an old friend is finding herself somewhere near the end of that long, slow slide down. That changes things. She knocked the breath out of me at least twice.

Turning Darkness into Light

3/5. Further adventures in this secondary world fantasy about the rediscovery of dragons, long thought extinct. The granddaughter of the heroine of the previous books is a translator hired to translate newly discovered tablets that tell an origin story about dragons and humans, but political schemes are afoot.

This was pleasant and, if you care about linguistics more than I do, you will enjoy the extended translation passages complete with footnotes where the translators variously puzzle, squabble, and explicate. Mostly, though, I was distracted by the heroine’s dreadful lingering romantic longing for a man who is terrible and treated her terribly. Girl. Girl. I stopped having any interest in watching someone go down that road when I was maybe twenty-five. Luckily, the book does at least know he’s terrible, so there’s that.

A light book, even as it is about weighty things – great conflict, and how our beginnings and our stories shape the present.

Being Seen

3/5. I read this what feels like a year ago, even though it’s only been about six weeks (life has been a lot, guys). So I don’t remember it as well as I’d like. It’s a loosely organized collection of essays discussing the many facets of ableism that can operate in a disabled person’s life, through an autobiographical lens. I keep picking up these books and then swearing off them because I am not at a place in my life when I need to be reading these anymore. This is a pretty good 101-201 level entry, with a lot of rage in its pages. She also enjoys some media criticism between the autobiography – you probably know her from twitter or various commentary outlets if you are scifi fandom adjacent – but her preferred subjects are horror and so not at all of interest to me. Marked down just because I keep forgetting to stop reading these ‘explain it to the ableds’ books.

Oh, the author does read the audiobook, which I know I am generally very down on, but she does it well.

Content notes: Oof, A lot of bad things have happened to her and people she loves, some of which I’m sure I have forgotten. Parental death, homophobia, bullying, ableism of all sorts, medical malpractice, miscarriage, emotional abuse.

Two books of a contemporary romance trilogy about three black sisters. I read two of them because I could tell the middle book’s heroine was going to be waaaaay too much of a hot mess express for my enjoyment at this moment, and I do what I want. I liked these in general – they’re a big step up from her earlier books, which I bounced off of. And I particularly like having black heroines and one black hero in books that are not really about race, for the most part.

Get a Life, Chloe Brown

4/5. The one about Chloe, who moves out of her parents’ mansion to try and make it on her own. Which she can definitely do, though her bad case of fibro makes it tough going in places. She ends up asking her building superintendent for help, you know, getting a life. They have super hot sex, there’s a cat, it’s great. This definitely falls into the category of ‘wish fulfillment disability romance,’ because part of what makes him The One is how immediately and flawlessly he gets it. He knows how to plan for her unpredictable chronic pain, he doesn’t mind when her meds make her anorgasmic (and oh look, magic, she comes anyway), etc. That’s not life – attraction doesn’t grant a person a special ability to get it, trust me. This book is in general super invested in sorting people by how they react to a disability and keeping only those who get an A+. Doing that would result in having a very small world, which is exactly what this book is trying to expand, so it doesn’t really work here. But it’s a nice fantasy.

Content notes: Recollection of ableism, chronic illness.

Take a Hint, Dani Brown

4/5. Cranky bisexual wiccan Ph.D. student sister ends up fake dating the hot security guard on campus for romance reasons. He’s already falling hard but she doesn’t do relationships – is incapable, she thinks – so it gets a little messy when they start sleeping together. Also, the universe is trying to give her a hint here and she’s a bit slow on the uptake. Points for a fat heroine where the hero appreciates every inch.

Content notes: Recollection of grief and depression.

Care Work: Dreaming Disability Justice

4/5. Collection of essays on disability justice. I picked this up because the author is a queer disabled person (I thought woman before picking up the book, but actually she/they are genderqueer), and disability writing from that perspective is, uh, not thick on the ground. Turns out this book is not really meant for me because, though I am also queer and disabled, I am white and well-off, and therefore really not part of the community she is speaking to. More power to her – she knows she is writing a very specific collection for very specific people, and she knows how rare that is and how unusual it is for her to get this published.

That said, there are still pieces here that really speak to me. Specifically, this one on how our models of trauma are ableist and unrealistic and how they only approve of traumatized people when they are either in crisis or getting steadily better or over it. Any other state is not acceptable, and any life that simply incorporates trauma needs to be pathologized. This is a thing I have been shouting about in fandom for literal years, and this essay does it much better than I ever have. (You guys wouldn't believe some of the comments I had to delete on a story that dared to posit that a person could just live with the consequences of trauma without having a breakdown or going through a traditional healing process, and also that his trauma lived a lot in his body but not very much in his mind because that's the sort of person he is. This upset people a lot because it violated the Rules of Trauma Narratives or something, and wow did they let me know.)

Hench

4/5. Our protagonist works shitty gig jobs doing data entry for villains. Until she's in the wrong place at the wrong time and gets badly injured by a superhero. So she turns her data analysis skills to the question of how much harm superheroes cause – a lot – and ends up climbing the ranks of a villain organization as she mostly breaks bad to make it sorta right.

I enjoyed this as an emotional experience, so don't let my subsequent complaints put you off. The whole middle section of this book is competence porn as she uses various schemes to take down the deserving. Highly satisfying. Then everything takes a turn to the more complicated and painful and nuanced. But because I enjoyed this, I spent a fair amount of time thinking about it, and well:

-So she calculates the costs of superheroes in life-years lost. The details are sketchy, but what we get is clearly talking about quality-adjusted life years or some similar shitty ableist metric. You know, the sort of thing where someone's disability or injury makes the years of their life "worth" less. Yes, this is a real thing that really gets used for real legal and economic decision-making. I was not expecting a discourse on the topic from this book, but it's a notable choice in a book that does some . . . things with bodies and wholeness that I am still going 'hm' about. It's complicated, but the short version is that lots of people on the villain side have broken or nonstandard or disabled or deeply othered bodies. And the heroes are whole and perfect and beautiful. Which is complicated by the fact that the villain side are the ones with complex backstories and rich inner lives, while (most) of the heroes are not at all sympathetic. But – mild spoilers, I guess – taking down one of the heroes ultimately comes down to wrecking his perfect body in a really grotesque body horror kind of way. And I really don't think the author had a good handle on all of this, and how it interplays with the general history of superhero canons which have extremely shitty disability politics.

-As I said, the protagonist and her righteous cause are squarely on the villain side. So as you'd expect, this book grapples a bit with how this scrambles the good vs. evil narrative, though it doesn't land in a terribly interesting place from my point-of-view. In the end, it mostly seems that the difference between heroes and villains is that smart villains have more options. And it does this while trying really really hard to pretend that the separate question of lawfulness and unlawfulness does not exist. Because I guess we're just not going to talk about how this villain acquired his absolute mountains of cash, huh. Yeah, it totally wasn't through human experimentation to make medical breakthroughs, oh look over there superheroes are bad guys, mmm-hm.

Anyway, like I said, for all that, this was fun, and as complicated as I wanted it to be, and I would definitely read the sequel she left space fore. Also, the protagonist is bi (or possibly pan) and quite horny, which is fun.

Content notes: Body horror in the last chunk.

Shards of Earth

4/5. First in a trilogy about post-Earth-destruction human diaspora, and what happens when the giant inexplicable alien destroyers come back years later.

Enjoyable mash of galactic politics stuff and weird psychic alien mind battles stuff. My overall opinion may change a lot, though, depending on how the rest of the trilogy goes. This book begins to evoke themes of survival under oppression and doing horrible things under compulsion, which . . . good for him, but like, I come here for the sentient spiders, you know?* And I just don't know if he's equipped to handle what he's dishing out. To say nothing of the running argument throughout this book about whether the elimination of disability is an acceptable price for genetic engineering. I've really got to see how all this falls out.

*Don't worry, there are multiple weird alien bioforms, he's still him.

Space Unicorn Blues by T.J. Berry

2/5. Science fantasy about a half human, half unicorn (fantasy creatures are aliens, you see) making his way through a corrupt human imperialist society where he is threatened with slavery and exploitation at every turn as his horn is a priceless resource.

A book full of things I like (queer disabled women, anti-imperialism, shitty mediocre white guys that the author knows are shitty and mediocre) that I collectively did not like much at all. The project of this book is to tell a fun story about surviving exploitation and slavery. And I don't mean to say that's an inherently bad project. It's not. You can tell fun – or at least funny – stories about the worst of things. But this one, with its graphic scenes of medical torture and exploitation and its cheerful meme jokes, yeah no. This is just a tonal splat that was always heading in the wrong direction from where I was, emotionally. Tamsyn Muir is much better at walking this high wire, though TBF the project of the Locked Tomb books is quite different.

But that's the beauty of having more than one book about queer disabled people in an anti-imperialist story to choose from: you cannot like one and that's okay.

It's a great title, though.

Content notes: Imprisonment, slavery, institutionalization, torture, etc. etc.

Return of the Thief

4/5. Conclusion to this long-running (in years, not pages) YA fantasy about the thief turned king.

I went on a journey with this one. I started out with oh come on, a completely new narrator again? and then very rapidly pivoted to oh, keep being amazing, sweetie, and from ugh, so she's keeping the main players off center stage for yet another book, come on to yeah . . . actually . . . Gen and Irene are exhausting, if we had to spend this whole book up close with them yelling at each other and having sex, I'd have to put it down every other page.

Anyway, I'm not actually sure this is terribly good as the end of a series. There are a lot of things solved by divine power (an actual lightning bolt!) that seemed to me to transgress some of the narrative rules of this universe, which was previously focused more satisfyingly on divine power operating painfully through human effort. I liked it better when all the gods did was tell Gen to stop whining. Still funny. But oh, this universe. Of course its final tale should be told by a young man with multiple severe disabilities. Of course. Absolutely no one else would do. I will miss them all, and what good friends they made (or, in several cases, more, even the offscreen queers arrrrrgh).

Content notes: References to the murder of disabled children, war, torture with few details, miscarriage and fears of maternal mortality.

FDR's Splendid Deception

3/5. A brief biography of FDR's public life, with a focus on his disability and how it was concealed. An interesting concept, and a book worth writing, but also a frustrating one as you can tell the primary sources are extremely tight-lipped. That's the point, though – there was an elaborate ruse constructed around him, including literally hundreds of people, and almost none of them talked about it. Most of them didn't even want to think about it. Including FDR who, it is clear, played jolly cripple so hard he sprained something and his face got stuck that way.

I have mixed feelings about this book as a book. It is #ownvoices, if you will, which I appreciate. But it has moments of unreliability, like talking about the conspiracy of restraint that kept press photographers from taking pictures of FDR in his wheelchair, enforced when necessary by the secret service detaining people and breaking their cameras, but anyway, this completely voluntary agreement, how extraordinary. Um. Voluntary, you say? This book is also too devoted to some psychological diagnosis across the decades, but not in the way I'm interested. It will go on about how FDR's categorical inability to speak of his disability itself ruined his health (he has lots of opinions about this), but is zero percent interested in why. Why the deception and, more complexly, why so many went along with it. Not just went along, but were deeply invested. Why, to this day, the word paraplegic is so rarely applied to FDR, even though it's what he was. The answer is obviously ableism, but there's a lot of layers to that particular cake here.

A Beautiful Mind

3/5. A substantial biography of an interesting asshole. Though for all its length, it doesn't manage to go deep on his mathematics (fair enough, you clearly need many years of training to even play ball), his queerness, his schizophrenia, or his eventual sort of remission of symptoms. This book was a little hard for me to read, as I have a close relative with severe paranoid schizophrenia, and the scars that has left on the family are, um, a lot. And speaking for myself, I spent a bit of time in my twenties looking over my shoulder, as it were, waiting to see if it was coming for me.

A good book, if frustrating where you can see how she could really have benefited from more information from the horse's mouth, but what can you do. Specifically, what was his internal experience of his kind of recovery like? He said it was like dieting – the symptoms and delusions were still there, but he had a kind of discipline over them. How? Was it the slow work of a methodical thinker over thirty years? Luck? Not like he knew either, but.

And yes, he was a truly enormous asshole before becoming ill, and then a different kind of asshole because he was ill, and then, later, something much quieter, more contained. This book almost violated my no-bios-of-assholes rule, but I stuck with it and I'm glad I did.

Pet

4/5. So this is interesting. It's a novella about a girl* in a (future…?) city several generations after it was convulsed by a truth and reconciliation type reckoning regarding violence an particularly many kinds of intra-family harm. Into this society which believes itself now safe emerges a terrifying creature from a painting. He says he is here to hunt a monster. He means a child abuser, and what that means for this culture which has "defeated" that kind of evil is very complicated.

This is doing a lot of stuff in a small space and for a YA (or younger) audience. It's about teaching yourself to see what is in front of you, not the story you are told, and about appropriate ways to handle this kind of crime for a person and for a society. And it bent my brain a little around new corners -- yeah, I thought, but we don't have this story that we've beaten this. We have the opposite story, that it can't be beat, that it's just how people are. That's worse, in a way. But then I thought actually, no, we do have this story. Some people do, anyway. But it's smaller, and it goes like 'that can't happen in my family' and not 'that can't happen in my city.'

Also, I was initially startled to discover that the protagonists (who have a really beautiful friendship, btw) are in their late teens, as I had initially glossed them as much younger. Eleven, maybe? And I tried to figure out why they seemed so young, and I realized it's that they start this book not even knowing what abuse is. Like they need to go get the semi-forbidden pamphlets from the library to find out. And that's what made them seem too young for their age. And that is a really sad scale to be measuring on, but apparently it's what I was doing.

*She's actually a trans girl of color with a disability (selective mutism, though she also seems neurodiverse in a few other ways), if you want the whole tag set.

My Eyes Have a Cold Nose

DNF. Acquired blindness memoir published in the 1940's. This is a good book, and my abandonment of it is entirely about me not getting anything out of disability memoirs right now. Though if you want a thoughtful, careful discussion of how the world views disability – and basically none of what he describes has changed in 75 years – this is a good place to go. One thing that has changed is the physical cost of failed retinal detachment surgery. He was in the hospital for three months. I was in and out in a day, and yeah my recovery was really hard, but still. Three months.

A Princess of Roumania

3/5. First in a fantasy quadrology about a girl raised in New England discovering she is the lost princess of a European power in an alternate universe.

That description makes this sound like the usual sort of thing, and this isn't. Instead, it is opaque, politically dense, strange, and occasionally vicious. My library classified this as YA, which I think is one of those mistakes where someone thinks it's YA because there's a teenager in it. There is a teenager in it – several of them – but the emotional weight of this book actually rests with the villain, who is young and victimized and complicated and truly awful.

Thematically, this is about illusory identities. Characters histories are in doubt, their ages, their sex (or possibly also gender, it isn't clear) in one case. It makes this book slippery and kind of uneasy to read. I appreciated what this is doing, but I'm not sure how invested I am. I also have some concerns about disability in this book -- one of the villains is facially disfigured, and there's a whole thing with an amputee that did not fill me with joy, shall we say.

To the Left of Inspiration

DNF. I wouldn't have picked this up if I'd known it was a 'justify my disabled existence to the normals' book as opposed to an actual disability memoir. But it is, and I am allergic to such books these days. Not to mention this one is quite dull. It could be interesting – she has a doctorate in psychology and is an avid traveler and reader – but this book works so hard to make her life sound ordinary, guide dog and all, that it comes off as boring.

Also, on a separate note, calling your book "humorous" in the introduction is really not a thing I recommend doing. Basically ever. If you tell people it's funny, it is less funny, this is a rule of the universe.

Waist-High in the World

4/5. Essay collection. The first half is personal – about her marriage, her diagnosis with MS, etc. – and the second half takes a broader view of disability in society.

I think the best thing about this collection is how she lets herself have complicated emotions out loud. She's not wall-to-wall disability pride (though she definitely has it). She can talk about contemplating suicide when her husband, her primary caregiver, was facing possible imminent death from cancer, and also talk frankly about choosing joy. She can portray the strength of her marriage, and her husband can speak through her about his choice to stay in the marriage as an active one. He might leave one day. They both know it.

She makes people uncomfortable, that's for sure. I read an essay of hers back in a feminist disability seminar, and I remember how upset a lot of the other girls were by it. They said they were upset because her husband was honest about the burdens of being a full-time caregiver. Secretly, I suspect it was partly because she talks frankly about liking sex. Personally, I think any marriage that is so consciously chosen by both parties and that endures despite incredible strains that – the statistics show us – the vast majority of marriages don't survive means it's a hell of a good one, even if it makes people uncomfortable. Being disabled and having complex feelings about it makes people uncomfortable, news at 11.

Lock In and Head On

3/5. Mystery near future thrillers about a pair of FBI agents solving crimes related to people who have survived a flu strain that leaves them conscious but paralyzed, so they can pilot robot bodies or, rarely, a human with a compatible brain.

So the deal here is that the narrator remains ungendered, and there are two versions of each audiobook, one voiced by Wil Wheaton and one by Amber Benson. If only Leckie'd had those resources at her disposal with her debut, I tell you what. It works because the narrator is locked in, so exists to the outside world as a series of different robot bodies, and you can see how the nondisabled decide such a person is ungendered (and also desexualized). It's an interesting experiment, though the books themselves are about entirely different things. And it's an experiment worth doing, though it strains credibility if you've ever seen a cis person freak out over not knowing someone's gender, which I have way more often than I'd like. This is a thing that really upsets people, so the idea that everyone flawlessly refers to the narrator using neutral language doesn't really fly (and anyway, the narrator speaks with their actual voice, it is implied, so there's also that). But sure, if you dismiss those objections and just read it as nondisabled people eliding the humanity of disabled bodies enough to erase their gender and sexuality, which is a thing that happens without robot intermediaries, it works.

Anyway, I think the actual problem with these books is that the narrator is, uh, really dull? For a disabled FBI agent kid of a famous black athlete turned businessman, they're just . . . not interesting. Certainly less interesting than their partner, the furious and damaged lady agent. At a certain point, I have to suspect that de-gendering the protagonist removed a lot of Scalzi's characterization ~~crutches~~ tools, and well. Dull.

The Boy on the Bridge

4/5. Prequel to The Girl with All the Gifts, that post zombie apocalypse book I really liked. This one is also good. It's classic Carey – short, sharp-edged chapters featuring various people in a small, stressed social ecosystem, including people with disabilities. It's not as layered and brilliant as Gifts as it lacks some of the scope. But what it does do is subvert my expectations. I went into this book assuming I knew in broad outlines what was going to befall every single character, given what we know from Gifts, and I was wrong in both sad and hopeful ways. I also assumed that this entire story would be the story of failure – it's an expedition to find a cure for the zombie infection – and it turns out that is also a lot more complicated.

Okay but real talk, the point of this review is actually to share this article. Because (1) I see your inspiration, Mike Carey, and (2) good luck ever sleeping again, everyone.

The Rebuilding Year

1/5. This started out as a pleasant M/M modern romance (former firefighter injured on the job goes to med school and falls for the campus groundskeeper with teenagers and a nasty divorce behind him), but then it was all awkwardly stapled to a poorly-done plot about students dying on campus. And then.

I had to look up the pub date on this, because it reads like early 90's fanfic, in not the good way. It was published in 2012, FYI, and is clearly meant to be set right around then. But the two leads spend literally half this book performing 'we're not gay, we just love each other.' My god. I can't even remember the last time I saw that. And the homophobia. Not just the internalized stuff. Everyone in this book -- everyone minus a few bit parts – is toxically homophobic. Like 'gay men are all pedophiles' homophobic, and 'all gay people have HIV' homophobic. Up to and including the teenagers? Who have been living in L.A. for several years?

Here's the thing. Stories about homophobia are important to tell, because it is a fact of life for queer people. But there are stories about the realities of queer life, and then there are stories that are so relentlessly, uniformly, cartoonishly homophobic that it's like oh, I see, you just really enjoy writing about people being the targets of hate. And that, I do not respect at all.

Zero Sum Game

3/5. Thriller with a skiffyish element. Antisocial gun-for-hire and preternatural math genius gets tangled up in the fight against a shadowy organization of telepaths who can make anyone believe anything.

This had some fun elements – our antisocial heroine sort of accidentally building a community and being like what do? about it, for one. But eh, it's a thriller at heart, which means I really can't in general manage to care. My problem with thrillers is that, to my sensibility, they all seem to be screaming please please please give me a movie deal, just because of the kind of stories they are. And that sort of desperation – real or not – is annoying.