Reviews with content warning for Death of parent - Every Note Played

Reviews tagging 'Death of parent'

Every Note Played by Lisa Genova

5 reviews

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.

Content Warnings