{"id":1259,"date":"2015-06-19T09:00:14","date_gmt":"2015-06-19T13:00:14","guid":{"rendered":"http:\/\/disabilityinkidlit.com\/?p=1259"},"modified":"2021-08-22T13:59:44","modified_gmt":"2021-08-22T13:59:44","slug":"review-the-islands-at-the-end-of-the-world-by-austin-aslan","status":"publish","type":"post","link":"https:\/\/disabilityinkidlit.com\/test\/2015\/06\/19\/review-the-islands-at-the-end-of-the-world-by-austin-aslan\/","title":{"rendered":"Review: The Islands at the End of the World<\/i> by Austin Aslan"},"content":{"rendered":"

This review contains mild spoilers.<\/p>\n

The Islands at the End of the World<\/a><\/em> by Austin Aslan follows a teenage girl, Leilani, and her father as they try to make their way home from the island of Maui to the island of Hawaii in the midst of a global apocalypse.\u00a0 A mysterious atmospheric disturbance has shut down most technology and sets the world back a hundred years.\u00a0 A road trip on steroids, this book features car chases, secret military bases, and a narrator whose magical seizures give her the ability to speak to aliens.<\/p>\n

\"Cover<\/a><\/center><\/div>Yes, you read that right.\u00a0 Going into too much detail would spoil the story, but it is true that the \u201cnatural \u2026 weirdness\u201d of having epilepsy means that Leilani can connect spiritually with aliens.\u00a0 Aslan\u2019s portrayal of epilepsy up to this point had its ups and downs, but this reveal was too much for me.\u00a0 I burst out into shocked laughter when I first read it and it look me several minutes to collect my thoughts before I was able to continue with the book.\u00a0 This decision to make Leilani\u2019s seizures into a supernatural experience was troubling, to say the least.\u00a0 Medical conditions involving the brain are widely misunderstood, and epilepsy is an easy target for mockery and ill treatment in media and popular culture.\u00a0 The decision to make it literally otherworldly undermines the very real nature of epilepsy and only serves to help keep it mystical and inconsequential in the eyes of those who have not experienced it.\u00a0 This also plays into the magically disabled person trope, which turns the disability into a plot device, harming the people who truly experience the disability and actively misinforming those readers who do not.<\/p>\n

But my true ire was not raised until the two separate occasions when Leilani consumes aspartame in order to force herself to have a seizure. \u00a0The first time it is part of an escape attempt, and the second time it is so she can speak to the aliens.\u00a0 The moment it became clear that Leilani was going to use her seizures in this way I was flabbergasted.\u00a0 What bothered me was the way that this concept felt so easy for a person without epilepsy to include and not realize the hurt it would cause readers who actually live with the condition.<\/p>\n

The problem wasn\u2019t that a girl with seizures was saving the world; the problem was that having a premeditated seizure was the only way that she could do it.\u00a0 It was exploitative on a level that frightened me.\u00a0 Seizures are not casual.\u00a0 And until this, I thought Aslan had a grasp of that.\u00a0 Every time you have a seizure, you risk brain damage and physical injury and you unwittingly place your life in the hands of the people around you.\u00a0 It is vulnerability in the extreme.\u00a0 Overcoming the fear and anxiety that accompanies that is not an easy task. Leilani struggles with it throughout the book, which made Aslan\u2019s utilizing it in a martyr-like capacity feel even more insensitive and out of touch.<\/p>\n

I may have been able to grudgingly accept this alien communication thing had it been presented in a different way and had it not required an actual seizure.\u00a0 Maybe.\u00a0 I certainly could have accepted if Leilani\u2019s epilepsy helped her save the world because of the unique perspective that having a disability and being marginalized afforded her. But it was the exploiting of the seizure act itself that I was unable to stomach.\u00a0 It showed Aslan\u2019s disconnect with the condition he was portraying and reminded me too much of the harmful tropes that follow people with epilepsy on a regular basis.<\/p>\n

I was also concerned with the decision to make Leilani a surfer.\u00a0 A major part of my experience having epilepsy and living with this particular disability has been accepting my limitations and finding my strengths.\u00a0 When I was younger, I used to dive.\u00a0 I would jump off of boards and do tricks and flips before landing in the water.\u00a0 I wasn\u2019t on my way to the Olympics or anything, but it was my thing and I was pretty good at it.\u00a0 Then I began having seizures and had to quit because epilepsy and regularly leaping into bodies of water just don\u2019t mix.\u00a0 It was a responsible decision, but it was a difficult one.<\/p>\n

Leilani and her parents make some different choices.\u00a0 When she began having regular seizures, her doctor and the insurance company made her quit gymnastics. So after finding out her seizures were too extreme for a controlled, supervised, indoor sport, Leilani turned to surfing. Surfing<\/em>.\u00a0 The irresponsibility that allowed this was staggering. A sport that takes place in the open water, where the athlete remains solitary and seeks out waves while attached to a heavy board.\u00a0 A life jacket doesn\u2019t have the power to protect you from the dangers of a seizure in such a situation.\u00a0 Leilani accepts that she can no longer do gymnastics, but she does not accept that her limitations go beyond that.\u00a0 That there are things that she simply cannot do for her own safety and the safety of those around her; the people who may be forced to maneuver her out of the water and perform first aid that they aren\u2019t qualified for.\u00a0 Later on in the book, her father admits that letting her surf was a bad idea but they chose to allow it anyway, \u201cYou\u2019re an epileptic. Your mom and I breathe into paper bags whenever you surf. Don\u2019t you realize that? I never should have taught you how to surf.\u201d Having epilepsy means that there are some things that you can\u2019t do, but there are so many more that you can.\u00a0 And I believe that Aslan could have shown Leilani finding her strength in a passion that was not potentially detrimental to her health and safety.<\/p>\n

The plot of the novel begins when she and her dad travel to Maui to participate in an experimental drug trial.\u00a0 It wasn\u2019t mentioned whether Leilani had tried any other alternate treatments before joining the experiment and risking being the one put on the placebo.\u00a0 These alternates include the ketogenic diet, which is never acknowledged, or medical marijuana, which is proven to be a viable treatment option but Leilani and her father mock.\u00a0 The drug trial thusly seemed like a drastic decision and made me continue to question the responsibility of her parents, doctors, and even medical insurers.\u00a0 However, I was pleased to see her time in the hospital representing an accurate portrayal of the endless frustration that is having a chronic disability in the American healthcare system.\u00a0 The waiting, the tests, the being surprised when no one thought to inform you of things that you certainly should know about your own health were all there.\u00a0 And I was comfortable, for the most part, with the physical description of Leilani\u2019s seizures.\u00a0 The exception to that being the times she communicated with aliens because, \u201cshe\u2019s epileptic.\u00a0 Some \u2026 electrical thing.\u201d<\/p>\n

Since The Islands at the End of the World<\/em> takes place literally at the end of the world, Leilani must face the realities of her condition in a situation where no more medication or health care is forthcoming.\u00a0 Disability at the end of the world is a subject rarely explored in literature.\u00a0 And so there is one moment that caught my interest and really made me think more than any other part of the book.\u00a0 Leilani and her father are discussing the way that people are reacting to the loss of the technological advancements upon which we have come to rely and her dad says, \u201cA hundred years ago this thing\u2019s arrival would have resulted in a global hiccup.\u00a0 We have become too reliant on an unsustainable resource.\u201d\u00a0 This certainly resonates with discussions of environmentalism and energy efficiency, but I was caught by the inherently privileged nature of that statement coming from a man whose child\u2019s life and well being are tied to the medical care that is only possible due to modern technology.<\/p>\n

It got me thinking about the nature of modern versus historical epilepsy experiences and what it means to be post-apocalyptically disabled.\u00a0 I would have loved to see these themes explored in greater depth, especially in the scenes where Leilani counts her remaining pills and considers the pros and cons of rationing them as her supplies dwindle.\u00a0 Going further with this idea would have made provided this book, which is great as an action-adventure, with a richer literary quality.\u00a0 Exploring the way people with disabilities would find ourselves at advantages or disadvantages in an apocalyptic world opens up lines of discussion about the limitations of disability and the strengths of adaptability, specialized skill, and a worldview lacked by most able-bodied people.\u00a0 Hopefully Aslan can explore this more in the promised sequel.\u00a0 With the continued popularity of apocalyptic and dystopian novels, the lack of disability representation in those worlds needs to be addressed and Aslan has here the perfect opportunity to begin that conversation.<\/p>\n

The Islands at the End of the World<\/em> excelled on many levels: the plot was well paced and the main characters were relatable and sympathetic.\u00a0 The action was engaging and the way people reacted to the apocalypse was scary and extreme but not implausible. \u00a0There was accuracy in the basic aspects of having epilepsy such as wearing medical bracelets and waiting to be able to drive.\u00a0 It grasped the physical and public nature of epilepsy that is so terrifying when Leilani has flashbacks to once having a seizure in school, and the EKG was described with precision.\u00a0 But these could not, for me, outweigh the things that I found disrespectful and irresponsible in this portrayal.\u00a0 It touches on many other issues worth discussing, such as race, religion, and class warfare, but from a purely disability perspective, it fell short of its mark.<\/p>\n","protected":false},"excerpt":{"rendered":"

The Islands at the End of the World<\/em> excels on many levels \u2014 but from a purely disability perspective, it fall short of its mark.<\/p>\n","protected":false},"author":41,"featured_media":1260,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_generate-full-width-content":"","kt_blocks_editor_width":""},"categories":[62],"tags":[159],"genre":[35],"age_category":[8],"disability":[93],"_links":{"self":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/1259"}],"collection":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/users\/41"}],"replies":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/comments?post=1259"}],"version-history":[{"count":2,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/1259\/revisions"}],"predecessor-version":[{"id":7289,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/1259\/revisions\/7289"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media\/1260"}],"wp:attachment":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media?parent=1259"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/categories?post=1259"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/tags?post=1259"},{"taxonomy":"genre","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/genre?post=1259"},{"taxonomy":"age_category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/age_category?post=1259"},{"taxonomy":"disability","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/disability?post=1259"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}