Review of The Life of Riley Living with Duchenne Muscular Dystrophy
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G Duda
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- Latest Review: The Life of Riley Living with Duchenne Muscular Dystrophy by Dianne DeMille PhD and Nina Stuart Herrera
Review of The Life of Riley Living with Duchenne Muscular Dystrophy
[Following is an official OnlineBookClub.org review of "The Life of Riley Living with Duchenne Muscular Dystrophy" by Dianne DeMille PhD and Nina Stuart Herrera.]
3 out of 5 stars.
The Life of Riley is the real life story of Riley Herrera, a man born with a terminal subtype of muscular dystrophy, known as Duchenne's. The book takes the reader on a journey through Riley's mom's eyes, giving us insights into his struggles as he grew up battling his disease. It's a poignant tale about hope, as Nina, Riley's mom, keeps reminding us throughout the book. Hope for the next day, hope for change, hope for it all to get better and easier. The entire book, really, is about Nina's hope that Riley can live a good, fulfilling life despite his disability.
Now, is this an important book? Yes, but we will get into that a bit later. Is this a good book? That's a bit more debateable. It's a book written in a very simple way, in a reflective style, and these two things both hinder and help it. It really depends on where you are in the story that the style either shines or dulls. The lack of professional editing in this book doesn't help during those moments were the book is REALLY dull. Its confusing formatting also holds it back. Why does this book have two different types of subchapters? It made it a chore in some places, where you would come across a new subtitle and think 'man, is this the end of the chapter? What a good chapter!' Only to keep coming across another subtitle, and another, and another. A book of this length shouldn't have only 6 or 7 chapters, it really isn't conductive towards more streamlined story telling.
I don't want to bash this book for it's story, because this isn't a story. This was a real person's life. I can, however, complain about certain beliefs within the book that added nothing to Riley's story.
Although this book tackles lack of accessibility, being disabled in school, and other such topics very early on, the way the author talks about mentally disabled people is so disparaging. Her non-mentally disabled brother does not deserve good education more than the mentally disabled kids he didn't want to share a classroom with. Saying 'he was just physically disabled' creates a horrible divide between the mental and physical aspects of disability. It ignores the overlap, the many people who experience both, and simply sounds like she doesn't believe mentally disabled children deserve the same good treatment that her 'just physically disabled' brother does. It's, truthfully, really shitty of an abled person to insert herself into the disabled community and then talk so disparagingly about an entire half of it. And this wasn't a one off thing, either, as when Riley gets old enough to go to university, the author makes the same sorts of comments once more! It's disgusting, really, and if it wasn't for the poor punctuation, lack of editing, and boring style, this alone would make me give this book 3 stars.
Abled caretakers of disabled people should not be passing judgement on who 'deserves' something more than another person based off disability, and to have these views really makes the author sound like a hypocrite later on. When she compares Stephen Hawking to Lebron James later on in the book, in a bid to make the reader realise no one single person is 'more deserving' of good life than another, her words ring hollow because she doesn't truly believe it, does she? Because her brother and son 'deserved better' than sharing a class with mentally disabled kids, because they were 'only physically disabled'.
A small thing, but I want to praise this book for actually including studies and footnotes related to the information the book provides. Although this is, for the most part, a memoir, it does what many self-help books cannot: it provides sources. It shows the reader that it knows what it's talking about, that it didn't pull its numbers out of the ether. This is commendable and should be mentioned, and it's the reason it gets a three rather than a two.
Lastly, I want to come back to the idea that The Life of Riley is an important book. Because it is, it's crucial for information to spread about the lived experiences of disabled people, especially those with rare diseases and disorders that people don't know that much about. The rarer a disease, the less funding is put into studying it, the less likely its sufferers are to receive adequate care.
But there is a bitter taste in my mouth, thinking about Riley and his family. A family of privilege and means, a family that could manage to pay for all of his expensive treatments, pay for constant moves, pay to build two accessible houses for him. A family that never once mentioned how difficult paying for his continued care may be. A family with so much privilege, that no wonder Riley lived for far longer than his doctors originally expected. And not once has this privilege been brought up in the book, not once has a single thought been paid to the boys with Duchenne's that could never HOPE to afford all these treatments. Where are they now? Most of them likely dead, taken even earlier than expected by a disease they couldn't manage, because they weren't privileged enough to not have to worry about the cost of said treatments.
The Life of Riley is a bittersweet tale about the life of a privileged little boy who grew into a privileged young man, who was surrounded by privilege and means. And his parents still DARED to wonder how he lived so long. They DARED thank god for letting him live so much longer. And not once was there a reflection on just how LUCKY they were to pay for his treatments, while hundreds of other little boys with Duchenne's died before they could even HOPE to receive care.
Is this book good? Not really. It's mid. Is this book important? Yes. Do I wish it was written by anyone else about literally any other boy with Duchenne's? Absolutely. I don't think Riley's mom really deserves praise for writing this book, when it's clear to me it's just another achievement in the life of a woman who has had it good enough to never wonder if she had enough money to feed her children and keep her ailing child alive at the same time. You're not blessed by god, Nina. You just have money.
******
The Life of Riley Living with Duchenne Muscular Dystrophy
View: on Bookshelves | on Amazon
3 out of 5 stars.
The Life of Riley is the real life story of Riley Herrera, a man born with a terminal subtype of muscular dystrophy, known as Duchenne's. The book takes the reader on a journey through Riley's mom's eyes, giving us insights into his struggles as he grew up battling his disease. It's a poignant tale about hope, as Nina, Riley's mom, keeps reminding us throughout the book. Hope for the next day, hope for change, hope for it all to get better and easier. The entire book, really, is about Nina's hope that Riley can live a good, fulfilling life despite his disability.
Now, is this an important book? Yes, but we will get into that a bit later. Is this a good book? That's a bit more debateable. It's a book written in a very simple way, in a reflective style, and these two things both hinder and help it. It really depends on where you are in the story that the style either shines or dulls. The lack of professional editing in this book doesn't help during those moments were the book is REALLY dull. Its confusing formatting also holds it back. Why does this book have two different types of subchapters? It made it a chore in some places, where you would come across a new subtitle and think 'man, is this the end of the chapter? What a good chapter!' Only to keep coming across another subtitle, and another, and another. A book of this length shouldn't have only 6 or 7 chapters, it really isn't conductive towards more streamlined story telling.
I don't want to bash this book for it's story, because this isn't a story. This was a real person's life. I can, however, complain about certain beliefs within the book that added nothing to Riley's story.
Although this book tackles lack of accessibility, being disabled in school, and other such topics very early on, the way the author talks about mentally disabled people is so disparaging. Her non-mentally disabled brother does not deserve good education more than the mentally disabled kids he didn't want to share a classroom with. Saying 'he was just physically disabled' creates a horrible divide between the mental and physical aspects of disability. It ignores the overlap, the many people who experience both, and simply sounds like she doesn't believe mentally disabled children deserve the same good treatment that her 'just physically disabled' brother does. It's, truthfully, really shitty of an abled person to insert herself into the disabled community and then talk so disparagingly about an entire half of it. And this wasn't a one off thing, either, as when Riley gets old enough to go to university, the author makes the same sorts of comments once more! It's disgusting, really, and if it wasn't for the poor punctuation, lack of editing, and boring style, this alone would make me give this book 3 stars.
Abled caretakers of disabled people should not be passing judgement on who 'deserves' something more than another person based off disability, and to have these views really makes the author sound like a hypocrite later on. When she compares Stephen Hawking to Lebron James later on in the book, in a bid to make the reader realise no one single person is 'more deserving' of good life than another, her words ring hollow because she doesn't truly believe it, does she? Because her brother and son 'deserved better' than sharing a class with mentally disabled kids, because they were 'only physically disabled'.
A small thing, but I want to praise this book for actually including studies and footnotes related to the information the book provides. Although this is, for the most part, a memoir, it does what many self-help books cannot: it provides sources. It shows the reader that it knows what it's talking about, that it didn't pull its numbers out of the ether. This is commendable and should be mentioned, and it's the reason it gets a three rather than a two.
Lastly, I want to come back to the idea that The Life of Riley is an important book. Because it is, it's crucial for information to spread about the lived experiences of disabled people, especially those with rare diseases and disorders that people don't know that much about. The rarer a disease, the less funding is put into studying it, the less likely its sufferers are to receive adequate care.
But there is a bitter taste in my mouth, thinking about Riley and his family. A family of privilege and means, a family that could manage to pay for all of his expensive treatments, pay for constant moves, pay to build two accessible houses for him. A family that never once mentioned how difficult paying for his continued care may be. A family with so much privilege, that no wonder Riley lived for far longer than his doctors originally expected. And not once has this privilege been brought up in the book, not once has a single thought been paid to the boys with Duchenne's that could never HOPE to afford all these treatments. Where are they now? Most of them likely dead, taken even earlier than expected by a disease they couldn't manage, because they weren't privileged enough to not have to worry about the cost of said treatments.
The Life of Riley is a bittersweet tale about the life of a privileged little boy who grew into a privileged young man, who was surrounded by privilege and means. And his parents still DARED to wonder how he lived so long. They DARED thank god for letting him live so much longer. And not once was there a reflection on just how LUCKY they were to pay for his treatments, while hundreds of other little boys with Duchenne's died before they could even HOPE to receive care.
Is this book good? Not really. It's mid. Is this book important? Yes. Do I wish it was written by anyone else about literally any other boy with Duchenne's? Absolutely. I don't think Riley's mom really deserves praise for writing this book, when it's clear to me it's just another achievement in the life of a woman who has had it good enough to never wonder if she had enough money to feed her children and keep her ailing child alive at the same time. You're not blessed by god, Nina. You just have money.
******
The Life of Riley Living with Duchenne Muscular Dystrophy
View: on Bookshelves | on Amazon
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Kibet Hillary
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- Latest Review: Sooner Secrets by Shelley L. Levisay
The lesson on hope is really important, but I hope that the author would consider having the book taken through another round of professional editing to eliminate the obvious errors. For the other comments on the book, I might not say much until I have read it. Many thanks for the amazing review, @G Duda.
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Latest Review: Sooner Secrets by Shelley L. Levisay
