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Lots of ink has been spilled about persons with disabilities and the harms of ableism, but perhaps not enough has been spilled by the subjects in question. “I don’t enjoy being incredibly public about my health, but being silent feels like a capitulation…” might be one way to frame it as Jake Goldsmith states in his latest collection of essays, In Hospital Environments: Essays on Illness & Philosophy. As a follow-up to an intellectualized memoir that was startingly intimate, Goldsmith captures the frustration, bitter hope, and grief of those afflicted by chronic illness. Yet, as the quote above states, if he doesn’t enjoy discussing his health why does he continue to publish? These essays unpack this sentiment in a variety of ways, but namely, Goldsmith is seeking connection, and maybe, unintentionally, it is a plea for a culture revision.
The collection begins, “My condition has been very serious, the worst it has ever been…I have maybe a few years left, again it’s hard to tell.” The essay is dated May 2020. Goldsmith has had every progressive diagnosis of cystic fibrosis (CF), yet this has not stopped him from writing. Which, despite what the essay works through, this paralyzing knowledge of forthcoming death. Even as he summarizes the quips from the pub over how chest-beating men would rather be shot than exist with dementia, Goldsmith critiques this attitude; “Bravery lets no one off the grave (4)”. It also begs the question if dying either peacefully or under duress is more heroic. He highlights that none of us truly have the choice, since none of us know the hour for when Death will call.
Yet, despite this grim truth-telling, Goldsmith continues in the following essays with restrained, but clear fury; “I prefer my hard truth to your fretting over what’s happening to me and what is possible for me.” The impulse to pity comes before compassion and that often circumvents any true action to be done. It also circumvents truly “seeing” persons with disabilities, because healthy or “healthies” as Goldsmith calls them, center themselves so readily. He goes on, “I’m the one experiencing this. You think you’re uncomfortable or scared…but I’m the one actually having to live this.” This reality of illness is quickly written off by the rest of the population and typically minimizes the efforts of activists who seek more accessibility, without seeing how badly it is needed. The cost of such efforts is dramatic and Goldsmith represents this cost because he admits to being past the point of hoping for a true dramatic change. Choosing the limited creature comforts and simple pleasures that are available to him, may be sad and the bare minimum to outside eyes, but this is his life.
While the essays do break away from the single line of thought, the choice of Goldsmith to open his collection with four essays that circulate his feelings on disability and his quality of life forces the reader to pause. The structure of these essays gives it a true sense of the subtitle, “Illness & Philosophy” but they are not as separate as that grammatical structure may preclude. His philosophy is directly informed by his living experience, as it would be with most of us, yet his values remain irrevocably the same, despite the compromises some may make, if we’re being honest. He of course points to the fact that he does not have a choice in this matter. His condition and diagnosis also preclude his desire to have a choice. He is spent and tired, as most with chronic illness and yet he feels he shouldn’t have to apologize for his state of mind. If he’s irritable, then give him the space to be irritable. It is such a common, unjust trope for healthy people to expect those who carry the burden of illness to be otherwise.
Goldsmith never wanted to be a “voice for the disabled” and it would be foolish to consider any one person would ever want that. It is a position that is thrust on an individual, who already must unpack and adjust to the injustice of such diagnosis, whether it was from birth or emerging later. The insight of In Hospital Environments is how Goldsmith summarizes his life’s experience as both personal and universal. He points out how healthies treat the disabled as one large amorphous group, as if accessibility is only required for some and not others as if other needs are more urgent than others. The taken-for-granted nature healthies have towards merely existing and the preference for being undisturbed and comfortable. All of these will sit uneasily with a “healthy” reader, while those who have chronic illness may see themselves quite clearly.
These essays are sobering but necessary. Goldsmith notes throughout, that people often don't want to be reminded of illness or disease, even if only as "feel good" stories. The distance is what stings because no one is willing to truly listen or truly know the realities of those with debilitating conditions. Being seen is the minimum that should be offered to persons with disabilities. Readers are invited in and if they are willing to swallow their assumptions and egos, there might be something here for them.
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