Bones, Spoons, and Elevators
The Tools of our Imagination
Small spoiler warnings for the episode “Hot Wheels” of Someone Dies in This Elevator
Content warning for ableism, discussions of disabilities and the lack of proper accommodation, and the perils of dog breeding
Noodles the Pug. Photo Credit to Jonathan Graziano. On Twitter @jongraz
Introduction: Frustrations Come from Something
In the latter part of 2021, the search for the next cultural fascination landed on a, at the time, 13-year-old pug turned TikTok celebrity named Noodles. Jonathan Graziano, Noodles’s owner, turned him into a seer of sorts by posting daily videos of the moment when he rouses his dog for their morning walk. It may seem like a straightforward task–and in many ways it is–but at his age, Noodles is not always an enthusiastic participant in this ritual. Sometimes, Graziano coaxes him up to find a dog ready for adventure, but other times, Noodles falls back into his bed as if to ask for five more minutes. This reaction sets the tone for the day. If Noodles is ready to go for it, it’s a ‘Bones Day,’ and his audience must follow suit and set out to conquer their to-do list with whatever far-flung goals they might have. However, if he slumps back down, it’s a ‘No Bones Day,’ and everyone has been granted cosmic permission to take it easy. Life may happen, so there is still some expectation of responsibility, but maybe just do it in your sweatpants while eating ice cream with your favorite Netflix show in the background.
I wasn’t on TikTok when Noodles rose to fame. To be honest, I jumped on the bandwagon earlier this year when a friend of mine started Twitch streaming and thought the platform might be a good vehicle for self-promotion. I’m always up for gaming an algorithm and for friendship, so I had the incentive to join–bones or no. But before then, I didn’t feel much of a need to. I wouldn’t miss anything. Enduring TikTok trends eventually make their way to Twitter, after all, and my presence on Twitter–though infrequent–was enough for me to stay on top of the more relevant cultural moments. From my experience, TikTok can feel like little more than a collection of brief “flash in the pan” memes. For the most part, trending sounds or jokes will fall flat just as quickly as they rose to prominence–i.e., a figurative millisecond each way. But Noodles and his predictions didn’t just make it to Twitter; he transcended the height of most TikTok memes and took over the whole internet.
Perhaps at this juncture, it would be worth mentioning or clarifying what Twitter can be like. After all, Twitter is where I first encountered Noodles, it is the context that shaped my understanding of the now famous pug, and it is where this essay technically begins. However, I wonder if that’s something I can fully convey or if it is too subjective or prone to the whims and habits of each user for you to understand my perspective. When I look at trending hashtags or topics, grievances and critiques are never far from the top of the feed. They sit where I will inevitably see them. That may not be your experience, and if not, I will be asking for a bit of trust that it was mine. Because that is where or how I saw a tweet that–months later–I have been unable to find again.
Although this tweet could have just been buried by the Twitter algorithm or left uncovered by my failing to search the site properly, I suspect it was deleted under some degree of duress. The fervor of those who drew some comfort or were emotionally invested in Noodles was hard to contain, and vigorously silencing any perceived dissent or contrary opinion is–unfortunately–a regular occurrence on the internet. To summarize it simply, this tweet voiced some sense of frustration that the entire internet, seemingly, could embrace a concept such as “Bones” or “No Bones” but needed Spoon Theory–a way for chronically ill individuals to describe their experiences and limitations–constantly explained to them or would outright ignore it.
Why do I remember this tweet? My go-to excuse is that my memory is abnormally strong, which has led to various awkward encounters where I will reunite with someone who cannot remember sharing a detail of their life that is now embedded in my brain. However, if this tweet did exist and has stuck with me, I would venture that it is because it touched upon an aspect of the human experience that I am fascinated with: namely, the limits of human imagination.
For many, a failure to understand Spoon Theory isn’t malicious or willful ignorance, but a genuine mental roadblock that “No Bones” days do not begin to broach. Consequently, I hope you will indulge me and permit me to explain in greater detail what specifically sets these two things apart, a distinction which highlights our limitations, and why we need to do better. This anonymous twitter user has valid frustrations, which I hope to address, but it goes beyond that. There are genuinely risks involved in stagnation when it comes to this issue, which is–really–a reality known by disabled individuals and hardly considered by anyone else.
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The Parts of a Bones Day (Both Spoken and Unspoken)
As I said in the opening section, the Bones/No Bones Day phenomenon centers around an elderly pug named Noodles whose owner proposes a daily morning walk and films the dog’s reaction. A Bones Day is a day in which Noodles stands for himself after being lifted, and a No Bones Day is a day in which Noodles limply falls back into his very comfortable-looking dog bed. In some ways, this dichotomy could be rephrased as carpe diem versus self care: seize the day or nurture the self. And while that looks straightforward, there’s more at play beneath the surface than that.
“Self care” as a concept has an unclear meaning despite how straightforward the term looks. On one hand, there’s the highly personal nature of it; everyone has different needs or responds to stimuli differently, and so “care,” in this instance, can and should be incredibly individualized. One might need social interaction like meeting up with friends over drinks to feel recharged while others would feel even more drained after such a get together. While useful, even that is a simplification as someone might respond differently depending on the day, week, or month. One’s needs shift as circumstances do, and the concept of “self care” is meant to include catering to these ever-changing needs. That should not be too surprising. We can recognize that self care is a highly personal endeavor, but that doesn’t really stop various industries from trying to use the concept to sell any number of wares to us.
This isn’t an off-hand observation on my part, delivery aside. Pieces about the subject are periodically published, and I doubt the pattern will fall out of fashion in the immediate future. Beyond being relevant no matter the circumstance, there’s something perversely fascinating about the development of ‘self care’ as we now have it. Or the degradation of self-care, as some may call it.
“Care of the self” was once about self cultivation, about training the mind and body to some fantastical or whimsical end, particularly for the Ancient Greeks and Romans as French philosopher Michel Foucault (1926 - 1984) argued (Sanli 2019). This could very well mean taking a break from political life, and at the time, that realm was considered central to daily life for those eligible to participate. Stepping away was no small thing. However, if this departure meant that one returned a better version of themselves, then it was seen as worthwhile. If you came back better and more able to contribute to the whole than you had before, it was seen as worthwhile. This aspect of ‘self care’ that included engaging/disengaging with the political realm lingered for some time, but it did evolve, moving away from the emphasis on the communal, or the need to maximize one’s contribution to the communal, and returning emphasis to the self. I would argue that this happened in conjunction with a larger shift away from communal homogeneity as a feature of the political but towards a recognition of the plurality of human experience (to borrow from Hannah Arendt). After all, the incorporation of the plurality in political life is not without its implications.
This plurality included different marginalized groups who then had to seek their own rights as well as the failure of the larger ruling body to empower these citizens created an almost existential-level conflict. Suddenly, for many, the act of merely existing as their authentic selves was a contentious one. If the goal of the ruling class was to destroy you, then living authentically was an act of rebellion. Consequently, in the words of activist and writer Audre Lorde (1934 - 1992), “Caring for myself is not an act of self-indulgence; it is self-preservation, and that is an act of political warfare” (quoted in Sanli 2019). Lorde was a black woman whose quote is entirely about putting herself first in a world that sought to take advantage of her, demanding that she serve not herself but the system that exploited her and to do so without complaint or any recognition of her own needs. And so, there’s something ironic–in the worst sort of way–about the commercialization of her quote. One can buy it painted across stickers, posters, and t-shirts. However, it seems inevitable that this would happen. Or, rather, part of another cultural shift. ‘Self care,’ on the whole, has been commercialized and blended with the phrase “treat yo self” (Sanli 2019). Rather than self-improvement or radical protest, we now think of it as eating comfort foods in pajamas while watching our streaming service of choice. And there is something rebellious about that in a world driven by “hustle culture” and in the face of societal pressure to commoditize every second of your day.
Perhaps there is something painfully inappropriate about the industry that has developed from this discourse, particularly in light of my last point. But where there’s money to be made, business will rise up. Just as nailing down those exact semantics is not without its difficulties, measuring the exact size of this market pie is challenging. For the sake of this piece, I don’t believe I need an exact figure, but in 2019, the industry had already crossed the $10 billion USD threshold (Conlin 2019). Considering the array of products out there, this figure does track. Searching for products or strategies could yield over 80,000 results depending on one’s search phrase or engine of choice (Conlin 2019). By these metrics, it isn’t unfair to say that the emphasis has shifted again to now being on indulgence or things that can be sold to us.
I would argue that the concept of “self care” has returned to a certain aspect of its roots. In its earliest iteration, “self care” was not synonymous with “self preservation.” If you were able to participate in politics in Ancient Greek and Roman societies, you had a degree of certainty and stability in your life that was not shared by all. The same could be said of the market makers or division heads at large corporations who took notions of “self care” as ‘free real estate’ ripe for the peddling of various wares, many of which aren’t required for someone to live.
And yet, that aforementioned point leads to a complex issue. Things like skin care treatments, bath bombs, and gourmet desserts can be considered luxuries if not a bit excessive at times. However, I will admit that some of these “self care” items are more necessary than others. In this matter, categories can be difficult to hash out. As an example, I enjoy wearing sweatpants and thick socks, which are both comfortable and practical. Comfortable in the sense that they don’t put any undue pressure on any part of my body as well as being soft against the skin, but these articles of clothing can keep me warm. External means of regulating temperature are important, particularly in colder seasons or colder climates. And yet, there’s something to be said about my selection of these articles and not the more formal presenting items that can do much the same thing. Ultimately, though, practicing self care means choosing the comfortable option when you have a choice between the two sets.But therein lies the sticking point: you do have a choice. There’s a luxury in that, even if it isn’t something you are aware of. I present that without a moral judgment or the intention of leading into one. It is still worth saying, though, that the need for garments is still met and one does not find themselves in the challenging situation that is going without clothing.
Noodles the dog is in much the same camp, even if we don’t realize it. He is a pug, and–also presenting this without judgment–as a breed, pugs are not without their challenges. They are one of several brachycephalic breeds, known for having wide skulls and pushed in faces. Aesthetically, the look is both distinct and adorable, in a way I am not qualified to explain. However, because of that look, brachycephalic breeds, pugs included, are prone to health problems. While some dogs of this type are healthy, the shortened muzzle can exert pressure on the respiratory system through a narrowing of nostrils and the elongation of the soft palate, potentially extending into the throat (The Kennel Club). Given how dogs’ anatomy works, an inability to breathe can make cooling down difficult as well as making any physical activity a Herculean task (Thomas and Armitage, 2017). Never mind the potential problems that could arise with their eyes, teeth, and spines (Thomas and Armitage, 2017). Or, still, the effect that stress of any kind can have on a creature, even the stress of poor oxygenation.
At this point, some would go on to a rant about ‘how unethical’ it is to own breeds like this, but I can recognize that this information isn’t widely known. And frankly, once the dog’s here, it deserves to be taken care of. That’s what Graziano has done. I won’t place a moral judgment on having a pug, but for Noodles to reach this age and still be doing so well, he has to be well cared for. The lifespan of a pug is expected to be about 12 to 15 years with all of these issues, and Noodles has recently turned–as of July 4th, 2022–14 years old, a feat in and of itself never mind when one considers how well he is doing.
Clearly he’s not worried about self preservation. Frankly, Noodles doesn’t worry about shit. And yes, we love that for him.
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But What about The Rest of the Day (And the Spoons Involved)?
On the other hand, Spoon Theory has been on the internet for a bit longer than Noodles has. In 2003, Christine Miserandino (she/her) posted a story to her blog called But You Don’t Look Sick about her trying to explain to her friend how lupus impacted her daily life (Cleveland Clinic, 2021). People with chronic pain or other restricting conditions be they physical conditions or mental illness have a limited amount of energy to get through the day. Being that energy is a difficult to conceptualize and amorphous construct, spoons serve as an easily graspable object for the metaphor. As Miserandino put it, she picked spoons because “I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a ‘loss’ of a life they once knew” (2003).
With that established, the challenge begins. One has to take this set number of spoons and allot them for the various tasks a day requires of them to signify the limited energy or means a “Spoonie,” the descriptor someone who utilizes this model may chose to identify with (Cleveland Clinic, 2021), might have on any given day. To add to that, the spoon costs for individual tasks can fluctuate both from task to task and day to day, but for the sake of argument, we can forgo spoon calculus. Some tasks–like getting dressed or making the bed–might only take one spoon on a good day or multiple on a bad, but every little task takes up some of this particular resource, whatever it represents. The point of this model is rather simple: if you start out the day with a small number of spoons and each daily task or activity has a spoon-cost associated with it, you must carefully distribute your spoons while still knowing that you could very well come up short or that you would have to borrow against another day’s spoons whether it is by depleting yourself to the point that rest is almost impossible or by putting off tasks. That’s the key part of this metaphor: there is no guarantee that you will have enough spoons no matter what you do or how important some or all of the tasks may be. There are no guarantees at all.
Now, I will add here that there are critiques to be had of the Spoon Theory. To give you the main one I’ve seen, Spoon Theory is limited by its design. If there were more accommodations or more of a societal willingness to provide assistance in various forms, someone with a chronic illness could find that they had more spoons that stretch longer. That shifts the responsibility away from a Spoonie and their mental calculus. However, Spoon Theory isn’t meant to be prescriptive, and so it shies away from this reality. It is predominantly a way to provide a sort of vignette into this reality. It should not be said that the Spoonie must solely be responsible for their own wellbeing, which would be a thinly veiled “bootstraps” argument. Really, it comes down to narrative intent. Far too many need to be convinced of this reality in and of itself. It is, in many ways, the step that proceeds the advocacy and a critical one at that. Honestly, disability rights are seldom championed for by those outside of that circle and those within that realm are hardly listened to. And despite the failings of Spoon Theory according to those who have chronic illnesses and know the pitfalls better than anyone, it takes a critical first step that is worth consideration. In other words, it opens the door for those with chronic illnesses to speak for themselves.
Consequently, my discussion on Spoon Theory is limited and excludes these other pieces not because they don’t matter in a grand sense but because I don’t have the authority to speak on them. Really, what I hope to do is not even clear the space for the chronically ills’ own self-advocacy but point out to the well meaning that such a space does not even exist. In many ways, it’s three steps back from where we should be, but this is where we find ourselves.
The most relevant issue, in this context, is the lack of guarantees present in the reality that Spoon Theory has to convey. While it’s a key part of the initial piece, dialogue around Spoon Theory has moved away from this imagery and focused more on practicality. I would call this inevitable. Spoon Theory grew from being a metaphor to being a way to communicate one’s current state, and with the emphasis being on the present, some details behind the initial story have fallen away. In some ways, this is understandable. Communication requires at least a bit of efficiency, but there are consequences to this adaptation, particularly in this situation. This adjustment creates a gap through which some of this message can be lost. By focusing on present capabilities, it taps into an experience that is not unfamiliar but also incomparable. We’ve all had days where everything feels daunting, sure, but that’s a moment in time often caused by environmental factors or current circumstances. While unfortunate, those moments are temporary, and so the decision making process experienced by sufferers of chronic illness cannot compare to this shared experience despite the temptation to conflate them. Rather than experiencing a momentary inconvenience, a Spoonie spends everyday operating within a certain quota at a pace that will not burn through any additional resources while knowing that there are no guarantees that they will even have enough spoons to get through the day. The nature of this ongoing challenge and the implications therein aren’t experienced by most. This scope is defining in a way that is not immediately obvious. Spoon Theory is able to capture this unparalleled hardship known by those who live with a chronic illness: that this lack of resources is the default. They will never have a reason to trust or suppose that they will be able to handle everything that will need to be done on a given day or in a given frame of time in order to survive, never mind thrive.
Ultimately, even a No Bones Day assumes the haver/participant will have their needs met or won’t have to worry about meeting their own needs. And that is not necessarily something to condemn but the state of affairs every human being should be able to have. If steps are needed to reach that point, then fair enough. In fact, those steps should be taken. But Spoon Theory was created to explain a lack of those promises. The birth of spoon theory came from Miserandino walking her friend through the reality of Miserandino’s uncertain situation, and though it was not the intention, her friend’s emotional reaction points to a larger discomfort we have with such delicate realities. We are not inclined to think that such an experience is possible. Never mind that is had by those we care about. There is a mental roadblock that we don’t see an immediate need to overcome, assuming we even know it is there.
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The Necessary Confrontations, Sometimes in an Elevator but Sometimes Not
I should start off this section by saying there is a chance that this failure to consider or imagine is just ableism in some form or another. There are a significant number of people who see anyone with a disability or chronic illness as “lesser than” either themselves or human. In addition, there are those who don’t necessarily share that view but don’t want to put in the additional funds or efforts required to accommodate or adjust the world around them for those different from them. Arguing against malice or selfishness is difficult. It’s something many wiser than me have attempted to no avail. So while I hate to take the “easy” way out in pieces like this, I have to shelve the issue for now.
The most well-meaning rebuttal would likely be something along the lines of expectations. You can’t really expect people to know about this limitation or how to overcome it. After all, we’re all born knowing nothing beyond how to cry out for much needed assistance from those around us at whose mercy we remain for all of our formative years. And if you are not taught–because those around you could not or would not teach you–to consider the possibility or reality that many around you find themselves in, then how could you be expected to know? But even that answer doesn’t entirely feel genuine. It feels like an attempt to sidestep responsibility. Yes, we are born knowing nothing, but we learn to do things almost constantly. We learn the basics of being a person and have to continue learning beyond that as we go through life and navigate society. So no, I cannot expect you to know it, but it is fair to say that you could learn it.
I will admit, however, that this rebuttal points to a bigger problem. If this has to be learned, then it is imperative that we have the means to learn, which are not always readily available. Besides social media–which is highly algorithm driven–and other forms of nontraditional media, there is no easily accessible venue for people to learn about these issues. And as stated, social media is algorithm driven; the design of which only caters to one’s already established desires and patterns. Effectively, algorithms are meant to show you content you might ‘like’ or be willing to sit with; to show you something challenging, contradicting or even just different might drive you off the platform, or–at least–it is a risk that cannot be invalidated with already established data. In this way, algorithms can trap you in your pre-existing world view, and in an attempt to keep you on its site and viewing both its content and advertisements, algorithms might lead you to your own stagnation or worse yet. Obviously there are implications to that. Many of which have been heavily discussed. We should be concerned about what it is we are encountering online, undoubtedly, but we should also be concerned about what we are not encountering.
In this instance, we–in the abstract sense–encountered Bones/No Bones on these apps in the same way that we encounter any sort of content. The algorithm led us to something it thought we would find appealing, something that gave our life some sense of joy or structure, and something we found digestible without challenging ourselves. It fits within the more standard understanding of the world and allows or encourages an indulgence or two, and it does not ask us to put in the sort of effort required to make accommodations. In fact, this cultural phenomenon almost presents a fantasy in which every single person has the absolute basics of their survival and no one’s body actively works against them. Spoon Theory, on the other hand, is not so palatable. It does ask us to reimagine what it means to be human. Or, rather, what it could mean to be human. It asks us to think about or to consider realities in which we lack the sort of guarantees we all might otherwise take for granted. And that makes us uncomfortable.
Of course, once we’ve reached that point, we may feel a compulsion to redirect or otherwise avoid that state of discomfort. There is something evolutionarily beneficial about that impulse, after all. The senses of pain and discomfort are the body’s way of demanding a course correction or some other form of redirect before damage is done. In general, it may be considered wise to adhere to those demands. But not always. There is a sense in which it could likely be best to push through that feeling and not shy away, particularly when it comes to the perception of discomfort that comes from having one’s world view challenged or learning about another perspective. Obviously I am not referring to any conversation in which one’s basic humanity is being questioned or debated. And the irony here is that for many with disabilities or chronic illnesses, that is what such conversations entail, whether it is realized or not. For this reason, the stories of diverse creators–or stories created by those willing to listen to this community if the bar is particularly low–are so important. It goes back to my previous piece on storytelling and revealed meaning. Creative endeavors allow one to present a different truth or view point in its entirety, catching all the nuances along the way.
When thinking back to the initial story Miserandino presented on her blog, you may understand what I mean. Miserandino started Spoon Theory by trying to explain to her friend what it was like to do the internal resource allotment that her illness required of her. She then adapted that moment in time to a blog post that was then shared. The language birthed by that story then outran it, and once it did, it suddenly lacked the support of said revealed meaning. It’s a trade off, one that I feel unsuitable to judge as someone who does not need to utilize said terminology when talking to other people. In some ways, though, it was inevitable. The realities of those with disabilities and chronic illnesses had been pushed aside long enough to lack any sort of language to present themselves with. A life restricted in this way could not explain what it was or why it was that way. That is the sort of vacuum that demands to be filled, which Spoon Theory did. And it wasn’t like this new language completely erased what came before. Miserandino’s blog post is still very much up. I linked to it earlier in this piece, and you can find the link again in the citations portion of this post. However, many are unlikely to look into it, or even to the explanation page generously provided by the Cleveland Clinic.
In any event, this should be seen as yet another justification for more stories around this subject, and one of the more impactful–and accessible–of such comes from a podcast entitled Someone Dies in this Elevator.
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A Brief Glimpse of Revelation
Someone Dies in This Elevator (SDITE) is an anthology podcast from showrunner Tal Minear (they/them). Each episode is its own story that is–seemingly–in a completely separate place, time, if not universe from the others. The two connecting threads are the promises that there will be an elevator and that someone will die in said elevator. To some, that is the stuff of nightmares, and there are stories within the anthology that play into that, though there are others that take a relatively more “lighthearted” look at things. Assuming one can ever discuss or depict death in a lighthearted manner, I would understand the arguments of anyone who disagrees with that sentiment. The episode or story I want to talk about is not one of those episodes. “Hot Wheels” is distressing in part because of how grounded in our reality it is. This is not a story told in some far off spaceship or fantasy realm. It could very well happen in any of the many high-rise or multi floor office buildings that we have all around us.
In this episode, two wheelchair users named Waverly and Shannon meet in an elevator that–fortunately, at least in the beginning of this story–has enough space for them both. Perhaps the fact that this alone seems like a surprise and blessing is an issue. Is there something wrong with an elevator design that assumes only one wheelchair user will need or be using the elevator at any one time? Perhaps an engineer being honest with themselves and the realities of their profession would be better equipped to answer that than I am. Regardless, this detail may be convenient, but it will not change what happens next.
SDITE, by virtue of this title, is ripe for potential spoilers, and this episode is no exception. The inciting incident of this brief story is a fire happening in the building Waverly and Shannon are in. Per the programmed safety protocols, the ensuing alarm then triggers the elevator to stop. In some ways, this may be understandable. The elevator runs off of electricity that may or may not still be running to it, and fires are put out by water, right? Water and electricity don’t mix unless you want a different kind of fire that doesn’t respond well to water. And firefighters still use water to put out fires, right? That’s a thing. Or, rather, that’s the logic we have likely attached to something like this. When discussing this, we ascribe purpose and meaning to this emergency protocol that we have not verified for ourselves and overlook other details, specifically that if you needed to use the elevator before the emergency that need likely has not changed.
The emergency protocol in that situation–as explained by a 911 dispatcher–is for those in the elevator to deploy the emergency door release, climb out of the elevator and then take stairs. But for our heroes that’s not a possibility. The conditions behind their wheelchair usage prevent them from–one–getting out of their chairs and–two–doing something as physically arduous as climbing out of an elevator that is between floors. But no one ever thought of that. Or if they did, it was not something they cared enough about to fix.
The episode isn’t gorey. It doesn’t sensationalize what you must have realized was going to happen. If you are stuck in an elevator and cannot flee while the building around you goes up in smoke, what are you to do? You know the answer to that. You just don’t like it. To borrow terminology from one of my earlier pieces, this is the meaning the episode’s story reveals. Our failure to consider these other realities has meant that there are death traps hidden in things that are meant to keep us safe.
This is not just a far flung, almost impossible worst case scenario. Nor is it an isolated incident dwelling only in the mind of writer Erin Kyan (he/him). During the January 6th insurrection, Senator and wheelchair user Tammy Duckworth had to shelter and secure herself rather than joining the other senators as they were being escorted out. It wasn’t a move she took lightly or our of some misplaced urge to be the hero . Rather, it was something quite darker. She explained her predicament to Business Insider like this, "Being a wheelchair user, knowing how few entrances and exits and ways off the floor there are for me in my wheelchair, and that the stairs wouldn't be an option if they needed to move, I decided not to go forward” (Rojas and Epstein 2021). A lack of design or consideration for wheelchair users–perhaps because of an assumption that no one in that condition could rise so high or a more generalized disregard for disabled individuals–meant that Senator Duckworth knew that evacuation was not an option. Instead she and two staffers had to barricade themselves in her office and wait for the building to be cleared.
That decision turned out to be the best one. And Senator Duckworth’s military experience likely helped her remain calm and clear under such pressure. But it was also her military service that disabled her, as she lost her legs when her helicopter crashed in combat in 2014 (Rojas and Epstein 2021). For most disabled individuals, this expertise or soft-skill isn’t something they can rely on in an emergency, and as SDITE shows, it may not even be useful. Regardless of what you may think to do or what brilliant ideas you may have, if you are not physically able to follow through, you remain in very real danger. There are failures in the emergency protocols that are so profound that they become death sentences. And you have likely not thought about that.
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Conclusion
Once again, there is an element of these poor designs that is genuine ableism: a lack of care or even a disgust in the disabled, and I am not equipped to handle that. I cannot make you or anyone else for that matter care about other people. For the rest of us, who may want to care but don’t fully understand what that means, the rise of Bones/No Bones while Spoon Theory remains fairly obscure points to what the most pressing barrier we face is: a failure to fully visualize the reality that so many people find themselves in. And as to where that discomfort comes from, it’s harder to say. But facing the realities of the situation, the stories of the disabled and chronically ill, is a critical step forward in this process.
Works Cited
Brachycephalic obstructive airway syndrome. The Kennel Club. (n.d.). Retrieved March 3, 2022, from https://www.thekennelclub.org.uk/health-and-dog-care/health/health-and-care/a-z-of-health-and-care-issues/breathing-problems-brachycephalic-dogs/
Cleveland Clinic. (2022, March 11). What is the spoon theory metaphor for chronic illness? Cleveland Clinic. Retrieved April 11, 2022, from https://health.clevelandclinic.org/spoon-theory-chronic-illness/
Conlin, J., 2022. The $10-billion business of self-care. [online] Los Angeles Times. Available at: <https://www.latimes.com/health/la-he-business-of-self-care-20190508-story.html> [Accessed 2 March 2022].
Dickson, E. J. (2021, October 27). Noodle the pug is officially canceled. Rolling Stone. Retrieved March 1, 2022, from https://www.rollingstone.com/culture/culture-news/noodle-the-pug-annamarie-tendler-john-mulaney-olivia-munn-dont-let-this-flop-podcast-1247852/
Miserandino, C. (2013, April 26). The Spoon theory written by Christine Miserandino. But You Don’t Look Sick? support for those with invisible illness or chronic illness. Retrieved April 11, 2022, from https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Rojas, W., & Epstein K., (2021, October 27). Sen. Tammy Duckworth sheltered on her own on January 6 because evacuating the Senate would have been nearly impossible for a wheelchair user. Business Insider. Retrieved June 1, 2022 from https://www.businessinsider.com/wheelchair-user-tammy-duckworth-january-6-riot-hideout-ada-accessiblity-2021-10
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