(no subject)

[skygiants]

This write-up is long overdue -- genarti lent me the book sometime in August -- but Anne Fadiman's The Spirit Catches You And You Fall Down made an enormous impression on me in a way that I wasn't really sure how to put into words, and still am not quite.

I will freely admit I was wary going in. The book traces the case of Lia Lee, a Hmong immigrant child with a severe seizure disorder, and the clashes and miscommunications between her family and the doctors treating her disease. There are a few things I was worried this book might be:

- a voyeuristic indictment of the quaint, ignorant customs of the Hmong and their tragic inability to adapt to modern life

- one nice white lady's effort to pat herself on the back for being so understanding about the quaint, ignorant customs of the Hmong

- a vicious attack on the failures of the medical profession and the uncaring US hospital system

Miraculously, Anne Fadiman somehow manages to walk the very narrow line of telling the story of a terrible case of cultural misunderstanding and miscommunication without privileging one culture over another, even though one is her own; of showing everyone's mistakes without dehumanizing or othering anybody involved; and of clearly stating her own biases and involvement in the story without making it a story about herself or taking the attention away from where it should be, which is on Lia and her family.

I know! I didn't think it was possible either!

It's a long book, but every bit of length is cultural context for something, and, in my opinion at least, it's all important, and all absolutely worth it. (For the record, my mom is a neurologist specializing in seizure disorders, so I have at least a little bit more than the layperson's knowledge of the current handling of epilepsy in US medicine. That may have affected the way I read the book, but I don't think it did except in a general way. The book is about much broader issues than epilepsy.) I would recommend it to almost anyone; I hear it is currently required reading in a number of medical programs, and I'm glad. It should be.

Comments

[agonistes]

Ooh, I am glad to see this review, because I was thinking about reading it and I just finished my last ereader-friendly new book. An endorsement of very-little-fail-given-the-many-opportunities may seal the deal!

(p.s. we should talk soon re. next week! LIKE TONIGHT IF YOU ARE AROUND)

[skygiants]

You should read it! I think you would appreciate it a lot -- it really is astoundingly fail-free (at least from my perspective, and I'm not an expert on a good portion of the issues, but still.) Let me know what you think if you do!

(ps YES WE SHOULD and I will be! :D Look for me in a few hours post-volunteering shift and WE WILL TALK. \o/)

[silveraspen]

It was required reading in my program as an exemplar of how sociocultural factors are so CRITICALLY IMPORTANT in any sort of health care practice. I found it to be an amazing book.

[skygiants]

Isn't it incredible? I find it really hopeful, in a way, that so many programs have it as required reading now; I mean, I don't expect it to single-textedly change any given situation, but just the fact that this is being recognized as an important issue is a step forward.

[surexit]

YOur head must be so so full of fascinating things. ALL OF THE BOOKS YOU READ. *____*

[skygiants]

Hah, if only my head actually retained more than 2% of any of it! ;_____;

[genarti]

Usually, I shove books at you because I'm interested to hear your opinion or your summary. (Or to babble at you about stuff.) With this one, I shoved it at you because I basically want to shove it at EVERYBODY EVER, and you are someone who lets me do that kind of thing to you.

So I'm pleased to hear you were as impressed by it as I was! Because, yes. This book really is an amazing example of how to examine difficult issues right, as far as I could tell, and I too was heartened to learn that it was required reading so many places. Not that it'll fix anything by itself, but the fact that the issue is on people's radar now is important, I think. (I first heard of it because it was required reading for a few courses at my college that I didn't take -- Bioethics for one, I think, and then the med school.)

[skygiants]

I'd also been wanting to read it independently for years and years, just from seeing it around bookstores and places, so having your assurance that it really was that good and non-faily was a key factor in having me get around to actually doing it! (Well, that, and having you actually give me the physical copy of the book, er.)

Yeah, I mean, there are many times when people are just too exhausted and frustrated for anything to alter, but I have to think that there are at least a few times that are just borderline enough that having the issue on your mind might mean that few minutes of listening and extra care that could make a difference. Or I like to think that, anyway.

[schiarire]

One of my favorites since high school. :)

[skygiants]

You have good taste in favorites!

[happydork]

Oh wow. Just finished reading this book (on this recommendation, of course*) and I am very glad I read it. Thank you.

I worked for a couple of years for a charity that was all about [patient/service user/person]-centred health & social care. In the UK context, person-centred care has kind of been pushed up the agenda by a couple of big tragedies/scandals in the last ten years, but that's also ensured that the discussion has been dominated by how to avoid the sort of tragedies where an entire organisation ceases to function. The NHS now has a patient experience framework that lays out (a working draft of) principles for a minimum standard of care -- but the question of how you go from "respect for patient-centred values ... including cultural issues" to a better outcome for Lia Lee is not something that I've ever devoted much brainspace to, and I'm glad that I now have.


[*Side note: For my brother's birthday, I bought both of us the first three non-fiction books in your last few reviews that were (a) available on UK Kindle and (b) likely to be accessible to both of us. So I've just read this, and -- after some super fluffy fanfic as a unicorn chaser -- will soon be reading Five Came Back and The Black Count. Will let you know how I get on, and, after the next time we have dinner together, how he gets on!)

[skygiants]

Yeah, like, I am not a healthcare professional myself and I don't have any good answers to the questions raised by The Spirit Catches You, but I absolutely think it's worth devoting mental energy to them regardless.

The part that still impresses me is how compassionate it manages to be, around everything.

[:DDDDD I will look forward to hearing how both of you get on! I forgot that I hadn't responded to this comment, but I also hope the fluffy unicorn chaser fanfic worked as it should...]