This is a very academic, philosophical book, and I enjoyed every page of it. I need to start my review with a personal story.
I had to change my short editor bio on the website a few months ago. My bio originally said that I wanted to encourage “positive portrayals” of disabled people in the media, because discussions of marginalized people in the media always mentioned “positive” portrayals.
An author whose book we considered reviewing called me on it, saying something along the lines of, “Um, my book isn’t very positive. Do you still want to review it?”
I told him that I did, and, upon reflection, I realized that I actually want to see disabled people speaking for themselves in the media, whether their speech can be described as "positive" or not. Books, TV shows, and movies generally depict us either as objects of pity or as objects of inspiration. We tend to show up in stories when an author wants to evoke emotion in the able-bodied, neurotypical audience. Instead of disabled stories being used in this way, I want to see more disabled people telling their own stories by discussing their joys, their struggles with the majority culture, and yes, their pains in their own terms.
Neither Weak Nor Obtuse is a great example of the disability portrayal I want to see in contemporary media. The book is not very "positive." The author’s musings on his pain, losses, and death pervade the work from the first sentences — "I am very ill. That would be the first and most obvious thing to know" — to the last sentences — "I tremble at what’s here, so soon, so pointed: haunting and corroding me. When I do, I will die wearing two faces.”
This book is very, very real.
Goldsmith, who has cystic fibrosis, writes honestly about hospital treatments and coughing fits, about living with the knowledge that he will almost certainly die young, and about the isolation that he experiences because of his disability.
Say I go to the coast. I walk alone or with a friend along a stretch of cold beach, frequent a café, or try an ice-cream despite the crisp air. This is an ordinary thing but one I somehow struggle with. What am I to say of this? At once, there is an immense gratification at the simple, yet also a bitterness—and when I speak of my strange quandary, the subtle differences in a chronically ill life, of how I am not nor ever can be satisfied with myself in a simple setting at the day’s end—is it alien to those I say it to?
The constant burden of interacting with healthy people, which is to say, people who do not understand his experience, makes this isolation far worse. In addition to failing to understand Goldsmith’s perspective or limits, these people generally refuse to acknowledge their own impending deaths. Goldsmith is left to regularly face people who feel that they are immortal simply because they don’t feel their own mortality.
As Goldsmith says:
No one properly appreciates the cliché of urgency to life because vehicles could hit and kill you; they can live and ignore and be young and free and it is enviable. I am crudely poetic here, rather than attesting to psychological realities to substantiate the claim that death, illness and dying are not often confronted. I have done that before, I guess.
The Denial of Death will hold true, with the heroic sense of immortality still vibrant and gripping. Since birth my body was known to fall short, where most would have a far greater chance to thrive and protected from the commonplace alarm at disability. Few conduct themselves on the ’what if’ of remotely possible accidents tomorrow, and less tormented are they by darkness visible. *
The chasm separating Goldsmith’s perspective from the ideas of those around him is exhausting to negotiate. The discrimination that he faces from a world that determines human worth by productivity makes this chasm seem even deeper. It is no wonder that Goldsmith describes himself as “weary” throughout his book.
Goldsmith also discusses other facets of his experience, including his love of philosophy and his thoughts about the Disability Justice (DJ) movement. The Disability Justice movement acknowledges that all bodies are different, considers intersectional issues such as racism and ableism, and demands access. His take on the situation is a bit unusual because he proposes satisfaction with minor victories.
Again, I’m simply pessimistic about justice being achieved, with the strength and brutality of the enemy. With how little others care, with the weight of injustice being so heavy. Especially with disability justice, with the sustained and persistent cruelty enacted upon us, with all the backward steps, it is little surprise that one might not think bigger things are possible, and that our best, real, or even our only hope would be some mild reform. This pessimism is more controversial or harder for others to accept than apparently radical measures.
All in all, Goldsmith definitely shows the link between body and mind in action. His philosophical roots, which include author Albert Camus, ethicist Bernard Williams, and political thinker Hannah Arendt, are deeply connected to his lived reality, and his lived reality is deeply linked to his politics, philosophical approach, and approach to his own illness. His work is an evocative portrait of a philosopher with an advanced sense of the links between philosophy and the physical and social worlds.
Despite his exhaustion with healthy people and with the long process of seeking disability rights, Goldsmith gives us a great deal to ponder. He invites us to consider mild reforms and minor victories and to live in true acknowledgement of human mortality. Above all, his work stands as a compelling example of the bodymind; it is proof that an awareness can be simultaneously political, philosophical, and deeply personal.
* Goldsmith refers to The Denial of Death (1973) by Ernest Becker, a work of philosophy/psychology that discusses death-denial as a cultural foundation.
Kate Champlin is a Chronically Lit editor, curriculum developer, writing tutor, and copy editor. She's a late-deafened adult with a PhD. in literature and disability studies from Ball State University (Indiana). She wants to see more disabled people telling their own stories in media and on the internet.