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sarah_amy's review against another edition
emotional
informative
sad
slow-paced
- Plot- or character-driven? Character
- Strong character development? It's complicated
- Loveable characters? No
- Diverse cast of characters? No
- Flaws of characters a main focus? Yes
1.0
'She was ecstatic to see the wheelchair go. In her thirty-two years in the real estate business, she says that nothing ruined the feng-shui of a home more than a power wheelchair.'
'He hoped they wouldn't have to spend money on an unwanted construction project, an ugly, utilitarian ramp extending from the front door to the driveway, announcing his handicap to the world.'
'So here he sits, Mr. Potato Head without arms or legs, a bobblehead on a breathing torso.'
*Fumes*
Ok. First of all, I can appreciate the author bringing awareness to ALS, the progression of the disease and the need to find a cure. I knew very little about it and now have some sense of what the symptoms look like.
HOWEVER, as someone with disabilities, both born with and acquired, and a motorised wheelchair user, this read extremely ableist.
I understand there's times where stress and depression are very apparent living with and caring for someone with a disability, particularly in the earlier days and for some, nearing the end if it is progressive.
BUT more often than not, there is a level of acceptance and adjustment to doing life a new way. There are changes, there are some losses, but there are also some gains - new friendships, new hobbies, new outlooks on life.
The way the protagonists viewed ALS and all the symptoms with it - whether mild (God forbid you need to start using a wheelchair) or extreme, was offensive. There was never a point of acceptance. Never at any point was there a moment of trying to enjoy life while they still had it, no exploring ways to still participate in old hobbies or explore new. Just how awful life was for Richard and all the people who cared for him.
It gave the impression that people with disabilities don't really have a reason to live and would be better off dead. They are a burden to their loved ones and carers.
Genova might have studied about ALS and talked to people with the condition, but this does not mean they necessarily understood anything about the individuals outside of their symptoms.
In the wrong hands, particularly those who struggle with self-acceptance around disability or disease, this could be a very harmful book.
'He hoped they wouldn't have to spend money on an unwanted construction project, an ugly, utilitarian ramp extending from the front door to the driveway, announcing his handicap to the world.'
'So here he sits, Mr. Potato Head without arms or legs, a bobblehead on a breathing torso.'
*Fumes*
Ok. First of all, I can appreciate the author bringing awareness to ALS, the progression of the disease and the need to find a cure. I knew very little about it and now have some sense of what the symptoms look like.
HOWEVER, as someone with disabilities, both born with and acquired, and a motorised wheelchair user, this read extremely ableist.
I understand there's times where stress and depression are very apparent living with and caring for someone with a disability, particularly in the earlier days and for some, nearing the end if it is progressive.
BUT more often than not, there is a level of acceptance and adjustment to doing life a new way. There are changes, there are some losses, but there are also some gains - new friendships, new hobbies, new outlooks on life.
The way the protagonists viewed ALS and all the symptoms with it - whether mild (God forbid you need to start using a wheelchair) or extreme, was offensive. There was never a point of acceptance. Never at any point was there a moment of trying to enjoy life while they still had it, no exploring ways to still participate in old hobbies or explore new. Just how awful life was for Richard and all the people who cared for him.
It gave the impression that people with disabilities don't really have a reason to live and would be better off dead. They are a burden to their loved ones and carers.
Genova might have studied about ALS and talked to people with the condition, but this does not mean they necessarily understood anything about the individuals outside of their symptoms.
In the wrong hands, particularly those who struggle with self-acceptance around disability or disease, this could be a very harmful book.
Content Warnings
Graphic: Ableism, Body shaming, Chronic illness, Death, Panic attacks/disorders, Suicide, Terminal illness, Excrement, Vomit, and Grief
Moderate: Cancer, Cursing, Drug use, Emotional abuse, Infidelity, Misogyny, Physical abuse, Sexual content, Suicidal thoughts, Blood, Medical content, Medical trauma, Death of parent, Murder, Pregnancy, and Injury/Injury detail
Minor: Child abuse, Domestic abuse, Homophobia, Infertility, Mental illness, Racism, Religious bigotry, Cultural appropriation, Alcohol, and Pandemic/Epidemic