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gemmapz's review against another edition
challenging
emotional
hopeful
informative
inspiring
reflective
tense
fast-paced
5.0
Eddie generously shares his story. This is informational. Do not read to be inspired read to be better informed.
Content Warnings
Graphic: Bullying, Classism, Medical content, Ableism, Body shaming, Dysphoria, Excrement, Body horror, Medical trauma, Physical abuse, Toxic relationship, Colonisation, Grief, Gaslighting, and Abandonment
bookishmillennial's review
challenging
emotional
funny
reflective
sad
tense
slow-paced
general disclaimer if you’ve read other reviews by me and are noticing a pattern: You’re correct that I don’t really give starred reviews, I feel like a peasant and don’t like leaving them and most often, I will only leave them if I vehemently despised a book. Thus, no stars doesn’t indicate that the book wasn’t worthy of any starred system. It just means I enjoy most books for what they are, & I extract lessons from them all. Everyone’s reading experiences are subjective, so I hope my reviews provide enough information to let you know if a book is for you or not. Happy reading! Find me on Instagram: @bookish.millennial or tiktok: @bookishmillennial
I am floored by Eddie's experiences, but this is not the place for my non-disabled tears. Eddie takes us through his first year of his master's in public policy program at Oxford University. However, the story begins at the time of his admission and acceptance, because he points out the way the systems that the world operates in --and more specifically, that academia is in-- are incredibly ableist because of the constant roadblocks to accessibility. Though anyone would be thrilled to receive a full scholarship to Oxford (and let's not get it twisted; Eddie absolutely is!), there is no mention of awarding Eddie an additional stipend for care aids and accommodations he will need in order to have a fully immersive and thorough student experience, especially since he will be so far from home (South Africa). Once Eddie raises $20k pounds with the help of his friends and family, he is completely ready to start his Oxford adventure and to continue his quest in making the world a more accessible place for disabled folks everyone! Right? No. Then, he runs into another roadblock because of the visa situation for his care taker.
This is pretty much how the first half of the book feels; you're anticipating the next chapter, hoping to hear about Eddie's experiences at Oxford, and then, abruptly and relentlessly, Eddie is constantly at a standstill with waiting for care, empathy, and urgency, due to the inaccessible reality of Oxford (this was in 2016, so I'm unsure if it's changed by now but .... I work in academia and ..... I'm not confident). Eddie gets used to a revolving door of care aids throughout the school year, is charged even more costs for his care (upwards of $80k), is perpetually let down by academic leadership, the care agency, wealthier people who say they care, and by his aides throughout the book. It feels exhausting to listen to, and I think that was an intentional choice by Eddie, to show just how draining and disheartening this entire process could be for him. He constantly has to be an advocate for himself, which means he can never truly feel rested or at peace. He recognizes the responsibility he has in fighting for disability rights since he has worked with world leaders, but he also is just a young adult trying to have a good graduate student experience. He deserved to have fun, to fully enjoy this experience away from home, and so many ableist policies and behaviors of the school and others kept getting in his way.
This isn't a story to make you feel pity towards or feel bad for Eddie; he graciously shared so much with us because I don't know that many of us non-disabled folks would ever quite know the reality of what Eddie went through on a daily basis, and possibly what others who share his same disability do too. No one disabled author is the voice for all disabled folks. However, I thought this shined a spotlight on the more challenging and infuriating parts of being disabled. Multiple times throughout the story, Eddie mentions having to barter being kind/palatable and grateful, in exchange for kindness and care -- when he described this about his CARE AID, I was fuming. We are all human; we all deserve dignity, care, respect and compassion. We should not have to be palatable or "easy to work with" in order for others to care about the issues that we are going through. To be a Black disabled man is a reality I will never know. However, I will try to use my privilege to elevate and uplift marginalized voices in the ways that I can.
I highly recommend reading this for non-disabled folks especially. It presents the stark reality of what being disabled is like in a world that to be frank, just loudly and proudly shows it doesn't give a shit. Academia has a long way to go, but this goes for the whole world too! It was embarrassing as a higher education administrator to see the way higher-ed admins mistreated, toxic positivitied, dismissed, and objectified Eddie. I do not claim them but I know they're real.
On the other hand, if you have spinal muscular atrophy and this hits a bit too close to home for you, take care of yourself in choosing whether or not you want to read a book like this. It's up to you, and regardless of your experiences, I believe you.
I am floored by Eddie's experiences, but this is not the place for my non-disabled tears. Eddie takes us through his first year of his master's in public policy program at Oxford University. However, the story begins at the time of his admission and acceptance, because he points out the way the systems that the world operates in --and more specifically, that academia is in-- are incredibly ableist because of the constant roadblocks to accessibility. Though anyone would be thrilled to receive a full scholarship to Oxford (and let's not get it twisted; Eddie absolutely is!), there is no mention of awarding Eddie an additional stipend for care aids and accommodations he will need in order to have a fully immersive and thorough student experience, especially since he will be so far from home (South Africa). Once Eddie raises $20k pounds with the help of his friends and family, he is completely ready to start his Oxford adventure and to continue his quest in making the world a more accessible place for disabled folks everyone! Right? No. Then, he runs into another roadblock because of the visa situation for his care taker.
This is pretty much how the first half of the book feels; you're anticipating the next chapter, hoping to hear about Eddie's experiences at Oxford, and then, abruptly and relentlessly, Eddie is constantly at a standstill with waiting for care, empathy, and urgency, due to the inaccessible reality of Oxford (this was in 2016, so I'm unsure if it's changed by now but .... I work in academia and ..... I'm not confident). Eddie gets used to a revolving door of care aids throughout the school year, is charged even more costs for his care (upwards of $80k), is perpetually let down by academic leadership, the care agency, wealthier people who say they care, and by his aides throughout the book. It feels exhausting to listen to, and I think that was an intentional choice by Eddie, to show just how draining and disheartening this entire process could be for him. He constantly has to be an advocate for himself, which means he can never truly feel rested or at peace. He recognizes the responsibility he has in fighting for disability rights since he has worked with world leaders, but he also is just a young adult trying to have a good graduate student experience. He deserved to have fun, to fully enjoy this experience away from home, and so many ableist policies and behaviors of the school and others kept getting in his way.
This isn't a story to make you feel pity towards or feel bad for Eddie; he graciously shared so much with us because I don't know that many of us non-disabled folks would ever quite know the reality of what Eddie went through on a daily basis, and possibly what others who share his same disability do too. No one disabled author is the voice for all disabled folks. However, I thought this shined a spotlight on the more challenging and infuriating parts of being disabled. Multiple times throughout the story, Eddie mentions having to barter being kind/palatable and grateful, in exchange for kindness and care -- when he described this about his CARE AID, I was fuming. We are all human; we all deserve dignity, care, respect and compassion. We should not have to be palatable or "easy to work with" in order for others to care about the issues that we are going through. To be a Black disabled man is a reality I will never know. However, I will try to use my privilege to elevate and uplift marginalized voices in the ways that I can.
I highly recommend reading this for non-disabled folks especially. It presents the stark reality of what being disabled is like in a world that to be frank, just loudly and proudly shows it doesn't give a shit. Academia has a long way to go, but this goes for the whole world too! It was embarrassing as a higher education administrator to see the way higher-ed admins mistreated, toxic positivitied, dismissed, and objectified Eddie. I do not claim them but I know they're real.
On the other hand, if you have spinal muscular atrophy and this hits a bit too close to home for you, take care of yourself in choosing whether or not you want to read a book like this. It's up to you, and regardless of your experiences, I believe you.
Content Warnings
Graphic: Ableism, Chronic illness, Classism, Gaslighting, Homophobia, Excrement, Cursing, and Medical content
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