Travel – Renaissance Guy

Walking Down Main Street, USA

I was at Disney World recently. I’ve been to Disney world many, many times over the last decade and a half. Not that long in the scheme of things, I grant you, but long enough to have an impression and an opinion on how things ought to be. Enough to recognize the difference between when Disney lives up to their advertising, and when it falls short. This last trip, it seemed to fall short.

Unlike other times where some catastrophe has wrecked part of my trip, there wasn’t a singular issue. Rather, it was the collective effect of many little issues. Things like “Bell Services was slow” or “the app was buggy” or “there weren’t enough servers working the kiosks.” Little annoyances that, individually excusable, collectively undermine the experience. For another vacation, I might not even mention them. After all, these things happen. But Disney advertises itself as being a cut above the rest precisely because it supposedly smooths these issues over through its trademark pixie dust and monopolistic panopticon of an area the size of Manhattan.

The blame, according to people who follow Disney religiously, lies with the new executives. In trying to squeeze more profit from the parks, they have stripped things down to the bare bones. Cast members are overworked, overstretched, and underpaid, and the result is burnout and absenteeism. Thus, the usual layer of pixie dust becomes a bit spottier. It’s a compelling story, which is part of why I doubt it. It’s a little too quaint, a little too storybook, with a simple villain making bad choices, to explain systemic breakdowns.

Of course, that doesn’t make the story untrue. Disney has been cutting costs. Like any large institution, there is a measure of redundancy within the organization, at which the new executives seem to be taking aim. The new thinking seems to be that theme parks can still sell merchandise without needing a gift shop at every ride, so a lot of shops are being closed and the workers reassigned. But what happens when you keep cutting? The rides still function, but the lines are longer. The cast members, who are covering more people, are just a little less bubbly. Luggage takes a little longer to arrive. Food is just a little less fresh. The shelves aren’t restocked as quickly.

But if the answer is Disney’s CEOs, why is the same true everywhere across the country? If the reason for so many shops at Disney’s Hollywood Studios being closed is Disney corporate strategy, why are shops closing in my hometown? Why are the ingredients at my local grocery store less fresh, and the mail running late, and the store shelves restocking so slowly? You could say something like “supply chain issues” or “worker shortages” but really this only pushes the problem back a step. Why is the supply chain struggling now? Where have all the workers gone?

What seems more remarkable is that no one wants to mention the obvious answer. We’re in the midst of a pandemic that killed more than a million Americans before many states just stopped counting. Millions more have been sickened, and are unable to work to the same capacity. Others are restricted from working in order to support people in the former group. And this is only the disruption to the United States, not even touching the dislocation caused by disruption to global supply chains and migration.

The idea that society- any society -can shrug off upwards of a million excess deaths and millions more disabled, without any kind of social or economic disruption, is a fantasy far beyond anything at Disney World. The idea that workers will be just as eager to compete for the same wages, despite the increased danger of infectious disease, coupled with the pressure of having to cover for sickened or dead colleagues, likewise ignores the basic tenets of supply and demand. When this happened during the bubonic plague, it was the beginning of the end of feudalism, as high-demand workers gained more leverage and began to upend traditional hierarchies. The decades after the 1918 Influenza Pandemic were a high point of labor unrest and economic turmoil in the United States, which only began to dissipate after the New Deal fundamentally restructured the American economy.

Disney continues, as it long has, to be a microcosm of American society at large. Price hikes, staff shortages, shorter business hours, longer lines, are all making themselves known. And likewise, some of the early attempts to grapple with the issue are on display. In response to a more competitive labor market, in addition to tightening time off policies, Disney has been forced to look to new demographics, expanding and accelerating its college recruitment program. At the same time, since it cannot afford to lose the talent it has, the company has been compelled to become more inclusive in its rhetoric.

Which, if you consider the ongoing spat between the right wing Florida state government and Disney, is hilarious. It is the head-in-the-sand public health policies, coupled with xenophobic protectionist immigration controls that have pushed Disney to embrace a more liberal political stance to attract talent. If this pattern ripples out to the wider American economy, and without aggressive government intervention in the labor market and public health, it almost certainly will, it will be a reversal of fortunes worthy of the Disney storytelling tradition.

Unreachable

I suspect that my friends think that I lie to them about being unreachable as an excuse to simply ignore them. In the modern world there are only a small handful situations in which a person genuinely can’t be expected to be connected and accessible.

Hospitals, which used to be a communications dead zone on account of no cell-phone policies, have largely been assimilated into the civilized world with the introduction of guest WiFi networks. Airplanes are going the same way, although as of yet WiFi is still a paid commodity, and in that is sufficiently expensive as to make it still a reasonable excuse.

International travel used to be a good excuse, but nowadays even countries that don’t offer affordable and consistent cellular data have WiFi hotspots at cafes and hotels. The only travel destinations that are real getaways in this sense- that allow you to get away from the modern life by disconnecting you from the outside world -are developing countries without infrastructure, and the high seas. This is the best and worst part of cruise ships, which charge truly extortionate rates for slow, limited internet access.

The best bet for those who truly don’t want to be reached is still probably the unspoilt wilderness. Any sufficiently rural area will have poor cell reception, but areas which are undeveloped now are still vulnerable to future development. After all, much of the rural farming areas of the Midwest are flat and open. It only takes one cell tower to get decent, if not necessarily fast, service over most of the area.

Contrast this to the geography of the Appalachian or Rocky Mountains, which block even nearby towers from reaching too far, and in many cases are protected by regulations. Better yet, the geography of Alaska combines several of these approaches, being sufficiently distant from the American heartland that many phone companies consider it foreign territory, as well as being physically huge, challenging to develop, and covered in mountains and fjords that block signals.

I enjoy cruises, and my grandparents enjoy inviting us youngsters up into the mountains of the northeast, and so I spend what is probably for someone of my generation, a disproportionate amount of time disconnected from digital life. For most of my life, this was an annoyance, but not a problem, mostly because my parents handled anything important enough to have serious consequences, but partially because, if not before social media, then at least before smartphones, being unreachable was a perfectly acceptable and even expected response to attempts at contact.

Much as I still loath the idea of a phone call, and will in all cases prefer to text someone, the phone call, even unanswered, did provide a level of closure that an unanswered text message simply doesn’t. Even if you got the answering machine, it was clear that you had done your part, and you could rest easy knowing that they would call you back at their leisure; or if it was urgent, you kept calling until you got them, or it became apparent that they were truly unreachable. There was no ambiguity whether you had talked to them or not; whether your message had really reached them and they were acting on it, or you had only spoken to a machine.

Okay, sure, there was some ambiguity. Humans have a way of creating ambiguity and drama through whatever form we use. But these were edge cases, rather than seemingly being a design feature of text messages. But I think this paradigm shift is more than just the technology. Even among asynchronous means, we have seen a shift in expectations.

Take the humble letter, the format that we analogize our modern instant messages (and more directly, e-mail) to most frequently and easily. Back in the day when writing letters was a default means of communication, writing a letter was an action undertaken on the part of the sender, and a thing that happened to the receiver. Responding to a letter by mail was polite where appropriate, but not compulsory. This much he format shares with our modern messages.

But unlike our modern systems, with a letter it was understood that when it arrived, it would be received, opened, read, and replied to all in due course, in the fullness of time, when it was practical for the recipient, and not a moment sooner. To expect a recipient to find a letter, tear it open then and there, and drop everything to write out a full reply at that moment, before rushing it off to the post office was outright silly. If a recipient had company, it would be likely that they would not even open the letter until after their business was concluded, unlike today, where text messages are read and replied to even in the middle of conversation.

Furthermore, it was accepted that a reply, even to a letter of some priority, might take some several days to compose, redraft, and send, and it was considered normal to wait until one had a moment to sit down and write out a proper letter, for which one was always sure to have something meaningful to say. Part of this is an artifact of classic retrospect, thinking that in the olden day’s people knew the art of conversation better, and much of it that isn’t is a consequence of economics. Letters cost postage, while today text messaging is often included in phone plans, and in any case social media offers suitable replacements for free.

Except that, for a while at least, the convention held in online spaces too. Back in the early days of email, back when it was E-mail (note the capitalization and hyphenation), and considered a digital facsimile of postage rather than a slightly more formal text message, the accepted convention was that you would sit down to your email, read it thoroughly, and compose your response carefully and in due course, just as you would on hard copy stationary. Indeed, our online etiquette classes*, we were told as much. Our instructors made clear that it was better to take time in responding to queries with a proper reply than get back with a mere one or two sentences.

*Yes, my primary school had online etiquette classes, officially described as “nettiquete courses”, but no one used that term except ironically. The courses were instituted after a scandal in parliament, first about students’ education being outmoded in the 21st century, and second about innocent children being unprepared for the dangers of the web, where, as we all know, ruffians and thugs lurk behind every URL. The curriculum was outdated the moment it was made, and it was discontinued only a few years after we finished the program, but aside from that, and a level of internet paranoia that made Club Penguin look lassaiz faire, it was helpful and accurately described how things worked.

In retrospect, I think this training helps explain a lot of the anxieties I face with modern social media, and the troubles I have with text messages and email. I am acclaimed by others as an excellent writer and speaker, but brevity is not my strong suit. I can cut a swathe through paragraphs and pages, but I stumble over sentences. When I sit down to write an email, and I do, without fail, actually sit down to do so, I approach the matter with as much gravity as though I were writing with quill and parchment, with all the careful and time-consuming redrafting, and categorical verbosity that the format entails.

But email and especially text messages are not the modern reincarnation of the bygone letter, nor even the postcard, with it’s shorter format and reduced formality. Aside from a short length that is matched in history perhaps only by the telegram, the modern text message has nearly totally forgone not only the trappings of all previous formats, but indeed, has seemed to forgo the trappings of form altogether.

Text messages have seemed to become accepted not as a form of communication so much as an avenue of ordinary conversation. Except this is a modern romanticization of text messages. Because while text messages might well be the closest textual approximation of a face to face conversation that doesn’t involve people actually speaking simultaneously, it is still not a synchronous conversation.

More importantly than the associated pleasantries of the genre, text messages work on an entirely different timescale than letters. Where once, with a letter, it might be entirely reasonable for a reply to take a fortnight, nowadays a delay in responding to a text message between friends beyond a single day is a cause for concern and anxiety.

And if it were really a conversation, if two people were conversing in person, or even over the phone, and one person without apparent reason failed to respond to the other’s prompts for a prolonged period, this would indeed be cause for alarm. But even ignoring the obvious worry that I would feel if my friend walking alongside me in the street suddenly stopped answering me, in an ordinary conversation, the tempo is an important, if underrated, form of communication.

To take an extreme example, suppose one person asks another to marry them. What does it say if the other person pauses? If they wait before answering? How is the first person supposed to feel, as opposed to an immediate and enthusiastic response? We play this game all the time in spoken conversation, drawing out words or spacing out sentences, punctuating paragraphs to illustrate our point in ways that are not easily translated to text, at least, not without the advantage of being able to space out one’s entire narrative in a longform monologue.

We treat text messages less like correspondence, and more like conversation, but have failed to account for the effects of asyncronicity on tempo. It is too easy to infer something that was not meant by gaps in messages; to interpret a failure to respond as a deliberate act, to mistake slow typing for an intentional dramatic pause, and so forth.

I am in the woods this week, which means I am effectively cut off from communication with the outside world. For older forms of communication, this is not very concerning. My mail will still be there when I return, and any calls to the home phone will be logged and recorded to be returned at my leisure. Those who sent letters, or reached an answering machine know, or else can guess, that I am away from home, and can rest easy knowing that their missives will be visible when I return.

My text messages and email inbox, on the other hand, concern me, because of the very real possibility that someone will contact me thinking I am reading messages immediately, since my habit of keeping my phone within arm’s reach at all times is well known, and interpreting my failure to respond as a deliberate snub, when in reality I am out of cell service. Smart phones and text messages have become so ubiquitous and accepted that we seem to have silently arrived at the convention that shooting off a text message to someone is as good as calling them, either on the phone or even in person. Indeed, we say it is better, because text messages give the recipient the option of postponing a reply, even though we all quietly judge those people who take time to respond to messages, and will go ahead and imply all the social signals of a sudden conversational pause in the interim, while decrying those who use text messages to write monologues.

I’ll say it again, because it bears repeating after all the complaints I’ve given: I like text messages, and I even prefer them as a communication format. I even like, or at least tolerate, social media messaging platforms, despite having lost my appreciation for social media as a whole. But I am concerned that we, as a society, and as the first generation to really build the digital world into the foundations of our lives, are setting ourselves up for failure in our collective treatment of our means of communication.

When we fail to appreciate the limits of our technological means, and as a result, fail to create social conventions that are realistic and constructive, we create needless ambiguity and distress. When we assign social signals to pauses in communication that as often as not have more to do with the manner of communication than the participants or their intentions, we do a disservice to ourselves and others. We may not mention it aloud, we may not even consciously consider it, but it lingers in our attitudes and impressions. And I would wager that soon enough we will see a general rise in anxiety and ill will towards others.

Packing Troubles

Sometimes I am left to wonder whether I might not secretly be a closet fashionista, based mostly on how long it takes me to pick outfits for important events and while packing. Well, I say outfits. Mostly I mean t-shirts, since that’s really the only part of my default outfit that changes.

I don’t think this is the case. I think if I secretly cared about fashion, I would be able to read a magazine about the subject without my eyes glazing over, and would put more stock into outfits and appearance instead of just one piece. I also reckon I would feel more compelled to care for my hair and skin beyond the bare minimum of hygiene.

More to the point, I think I would have more of a sense of style. To be fair, I have a decent enough idea of what clothes I personally think look good on others, and I have acquired, through years of art classes and amateur illustration, a sense of composition that can be pressed into service to call together an outfit which I enjoy, but I lack the sort of intuitive sense of capital-F Fashion that naturally occurs to me for things like physics, medicine, or language.

I can mimic and iterate on styles I have seen, and I can cobble together styles through experimentation, but I cannot come up with a design or outfit that is, or better yet will be, trendy any more than I can predict tomorrow’s weather in a random city without consulting meteorological data.

All of this puts me squarely in the middle of the pack, particularly among my male peers, and none of this is news to me. I continue not to care what is hip and happening any further than the broad trends of the decade, which I heed only insofar as they permit me to carry on without confusing passers by. But if I do not care about fashion or style, why do I care about which t-shirts I bring on vacation? Why does the debate between iron man and Loki t-shirts keep me awake while I am trying to sleep the night before my departure?

The reason, I think, is that while I really don’t care very much about fashion itself, I do care somewhat about impressions. I care a great deal about communication. I value my ability to communicate above most else, and I endeavor to make what I am able to communicate count.

Whether fashion is closer to a direct form of communication, like hand gestures or literature, or the kind of cyclical competitive art that is mostly contained to others who practice it, fashion choices can and do serve to communicate. I studied this while in art class. Clothing is one of the best and most enduring examples of color psychology at work. Despite varying by culture and region, everyone knows that a red cocktail dress communicates a very different message than a conservative black dress.

It seems only natural, then, that I incorporate this means into my message. There are just two problems. First, as previously mentioned, I lack the intuitive grasp of fashion that I would require to communicate with the same level of subtlety and finesse with which I endeavor to wield language. To me, perhaps the only fear greater than not being able to communicate is to have my message be misinterpreted against me; to come across as hostile when I mean to be peaceful, or helpless when I seek to project strength. So I keep my arsenal limited- I have fairly normal standards for trousers, footwear, jackets, and so forth, and concentrate on the one or two elements that I am well versed in- t-shirts with strong, simple color schemes and intuitable messages.

Second, and this is where my indecision starts to truly become self-defeating: frequently, I do not know what my message will be. For all my studying of colors and shades, for all my collections of t-shirts with subtle variations on common themes, for all of my trying, I remain unable to predict the future. I can’t predict how I will be feeling, and whether or not I will feel sociable (brighter colors with bold features) or more introverted (muted colors and simpler designs). I can’t know whom I might meet, and what impression I shall want to leave them with.

So this, like so many of my problems, comes back to trying to divine the future. If I meet person C, and become engrossed in subject Y, is it more likely that I shall take position Δ (delta) and need to persuade them by using shirt א (aleph), or the opposite?

The answer, of course, is that I don’t know. I can’t know. I am asked to choose a vocabulary without even knowing with whom I will be speaking, much less what I shall want to say. It’s no wonder this makes me anxious.

The Medevac Threshold

There’s a trope in stories called the Godzilla Threshold. This usually comes up in large-scale stories, the kind where you can expect a scene of leaders pouring over maps or pacing a high-tech command room, and is more common in action, in particular disaster, movies, but it comes up other places as well. The Godzilla Threshold is the point at which all bets are off, and any measure, even releasing Godzilla, in the hopes that he will fight the new monster attacking the city, is justified.

This concept, and variations of it, come up all the time. In military strategy we have tactical nuclear weapons, which are employed when the cost of an enemy victory would be worse than nuclear escalation. In statistics, we routinely put dollar values on human lives and wellbeing to measure against other lives, or more frequently, to determine the point at which the cost of additional safety measures are more trouble to implement than whatever harm they’d prevent.

Are there other ways to stop the raging monster besides releasing Godzilla? Probably. Almost certainly. But all of those plans suffer from some variation of being more expensive, more trouble to implement, or they would’ve had to include long term planning and investment that started long before the monster arrived.

So here’s the thing about traveling with chronic health issues: there’s a very good chance that things will go catastrophically wrong. I never know if or when things will go wrong, only that they might. I have some idea of how they might go wrong, and knowing this, I have some limited idea of what would need to be done in those emergencies. I can’t know if or when, or which way things will go wrong, but I can make some contingency plans for the likeliest scenarios. This is why I always carry a full backpack within arm’s reach, equipped with sufficient variety of contingency supplies that it has been playfully dubbed by friends as “the Mary Poppins Bag”.

But my preparative efforts have to stop somewhere. At some point, trying to pack and plan on the assumption that anything that could go wrong will crosses the thin line from preparedness to paranoia, and more pertinently, becomes logistically impractical. At some point, I run out of space in my suitcase for backup prescriptions and redundant syringes. And long before that point, the extra burden, both literal and idiomatic, of trying to outwit the fates becomes simply too cumbersome to achieve anything of meaning.

After all, if I have more migraines than I packed medication for, then it’s pretty obvious that my day is already ruined, regardless of whether or not I have the medication. Similarly, if my life support device, my backup device, and the failsafe delivery mechanism, all get broken, it’s unlikely having syringes to fall back on are going to let me just go about my business. Far more likely would be a scenario where all of the above are destroyed by the same disaster, and then all I’ve accomplished is wasting the cost of syringes in addition.

There is no fix for fate deciding that today is not my day, and at a certain point, the amount of effort to salvage my plans by myself start to exceed the amount of grief that I would find from simply giving up and seeking outside help. I call this threshold the medevac threshold, because often I have to consider this in the context of packing for a cruise, where the only option for outside help may well be having a helicopter fly out and pick me up off my vacation, at great effort and exorbitant expense. But really this can apply to walking into the ER, or even to a pharmacy to get a refill.

Obviously, where this threshold is depends on the specifics. The namesake example of having a rescue helicopter fly out to intercept my cruise ship, like a scene out of The Hunt for Red October, presumably weaving through gale force winds and dodging lighting strikes, because of course that’s how it happens, is somewhat on the extreme end of possibilities. Even so, though it would certainly be a contender for most action-thriller-esque moment in my life, it wouldn’t be an automatic winner, which is, I think, a good reminder that even the worst case scenario isn’t that bad.

Keeping this in mind is one of the things that keeps me from second guessing my packing ad infinitum. Bearing the medevac threshold in mind is a good way to keep perspective. I am packing this week, and balancing between the need to be prepared and the need to avoid overstuffing the car is as challenging as ever, and so I remind myself that, in fact, failure, though it may not be pleasant or desirable, is an option.

Time Flies

I am presently strapped to a metal cylinder hurtling through the air at a high enough speed that the ground is far below us. This is very fascinating by itself. But what is more remarkable, at least where I’m concerned, is that, owing to my direction of speed relative to the rotation of the earth, I’m going to arrive at my destination having spent less time traveling than I did on the plane.

Some back of the envelope math, and a bit of fiddling around with simulations suggests that it is (barely) within the technical specifications of the aircraft I’m on to fly fast enough to theoretically arrive before I left, but this would require ideal conditions.

So, everyone else would have to get off the plane and take their luggage with them, and the plane would have to be fueled up to maximum capacity to allow it to burn continuously at full throttle. Also, the ballistic trajectory which I calculate would be best for maximizing speed and minimizing air resistance would jeopardize cabin pressure, risk burnout in the engines, and break several laws and treaties. And the fuel usage would mean we’d be gliding in for landing, that is, assuming the aircraft didn’t break up reentering the troposphere. All things considered, it’d probably be simpler and safer just to find a faster plane.

I’m not technically time traveling. Well, technically technically I am, but only in the deeply unsatisfying way that I’m being pushed forward in time at a rate of about one second per second. This is slightly different from on the ground, because of my velocity and distance from the earth’s center of gravity. The difference isn’t really meaningful to humans, and any relative advantage I might gain from moving faster through space, and ever so marginally slower in time (or technically, altering my velocity through spacetime in a way that temporarily favors space over time… you know what, just go get a physics textbook) will be cancelled out by the marginal increased long term risk due to radiation exposure.

Any real time change is because of time zones. Time zones are in a weird place between being arbitrary, since they’re ultimately human drawn lines on a map, and having some higher relevance, since they do, to a degree, reflect the earth’s orbit. One isn’t really time traveling, though they are in a sense switching around the hours of the day.

But even though it all comes out even, it is still meaningful, at least in human terms. Not all hours in the day are equal, and one extra daylight hour might mean as much as two hours asleep. Where those hours fall in the day matters a great deal, as does how they are spent. Indeed, Einstein used this notion to help illustrate the concept of relative time in general, saying “When you sit with a nice girl for two hours you think it’s only a minute, but when you sit on a hot stove for a minute you think it’s two hours. That’s relativity.”

In this instance, as I am flying west in the morning towards a destination I am excited about, the rearranging works in my favor, giving me an extra hour to adjust after landing, and perhaps more relevant to my case, making my late-to-bed, late-to-rise sleep schedule seem more normal in comparison.

There’s another quote along similar lines that I like, usually attributed to Vladimir Lenin: “There are decades when nothing happens. Then there are weeks when decades happen.” I’ve heard this quote thrown around a lot lately to describe the feeling of political and social upheaval, but I have always felt that it applied to me on a deeply personal level. Specifically, how it applies to my patterns of activity.

It is no secret that I tend towards being a homebody. This is not because I spend most of my time at home; this is misleading in two respects. Firstly, because I do in fact leave the house regularly, and secondly because with the modern internet, staying in the same physical vicinity is becoming increasingly common. Rather, I am a homebody because I am not a consistent participant in society, online or off. I do not go on social media, I do not go shopping, I do not discuss current events with my peers or participate in contemporaneity in any meaningful way.

Or at least, I do not do so consistently to be more than a cameo in most other people’s narrative. To explain in detail why this is true would mean repeating the points which I have already expounded upon at length. Suffice it to say that between my disabilities and my disposition, participation is far more difficult than it might appear.

This means that the few occasions when I can participate without hinderance are all the more valuable. An extra hour of time like this is worth a hundred hours sick in bed.

Wanted: Backpack

Job opening: Backpack, medium to large, willing to work long hours in rugged and varied environments to replace aging current backpack. Benefits few, but travel is included, and mandatory. Candidates must include:

Minimum two separate pockets

At least one water bottle pouch capable of holding at least one standard sized 24oz bottle without breaking or losing bottle

At least two comfortable straps, capable of being adjusted to fit other wearers, in line with orthopedic recommendations

Ability to be easily crammed into small spaces without damage to backpack or its contents. Examples of spaces to be crammed into include, but are not limited to: lockers, x-ray bins, underneath airplane seats, underneath tables while fully loaded.

Easily able to be opened and searched by hand, or scanned by x-ray.

Resistance to dirt, dust, pollen, sand, sunlight, and water.

Must conform to FAA, TSA, and airline personal item standards.

Candidates will be tested on a variety of metrics. Preference will be given to brands that carry a long warranty period. Although no specific color is required, the requirement to work in all weather conditions means that backpacks which have a high albedo (i.e. light colors) will be preferred.

Life Changing?

What does it take to change a life? To have such an impact on another person that it changes their default behaviors and life trajectory, even if subtly? Certainly it can be argued that it takes very little, since our behaviors are always being influenced by our surroundings. But what about a long-term difference? What does it take to really change someone?

The year 2007 was perhaps the most important and most impactful of my life. I say that 2007 was the year that my childhood ended. This may be a slight over exaggeration, but not by much. It was a year of drama and trauma, of new highs and extreme lows. In my personal history, the year 2007 stands out like 1914 in European history. It is a date I measure things from, even more so than my birthday.

That year contained both the best and worst days of my life to date. The worst day, July 20th, 2007, and the bad days that followed it, I have already written about. But what about the best day? What happened on that day?

January 5th, 2007 had all the hallmarks of a good day. I was on school holiday- summer holiday, in fact, since the Australian school calendar follows Australian seasons so that our main break comes around Christmas -and I was traveling. Being ever-curious and ever-precocious, I loved traveling, especially by plane.

All the mechanisms of air travel fascinated me: the terminals, with their lights and signs and displays, acting as literal gateways to every far flung exotic locale on the planet. Customs and security, with its fancy DHS eagles, and its sense of officiality, and finality, advertising that it once you cross this line, you have crossed some important threshold from which you could not simply return, as if somewhere, someone reading your story would be holding their breath while turning the page. And of course, the planes themselves, which not only seemed to defy physics in their flight, not only liked the world together, but did so in such comfort and luxury.

That day, we started early from the family farm in Indiana to the Indianapolis Airport, via a road that had enough dips and bumps that we called it affectionately “the rollercoaster road”. We arrived at Indianapolis Airport for our short flight to transfer at my all time favorite airport, Chicago O’hare, which I adore for its dinosaur skeleton, its Vienna beef hot dogs, and its inter-concourse tunnel, where I would stare up in wonder from the moving walkway at the ceiling light display. I was told that the abstract neon colors were meant to represent the aurora, but for my part, having seen both, I have always thought the lights at O’hare to be more impressive than the aurora.

We arrived in Orlando at about 8:00pm, which, to my then childish mind, was a kind of magical hour. Things only happened after 8:00 on special occasions- watching New Year’s fireworks or space shuttle launches on television, calls from relatives in different time zones. After 8:00pm was the time of big and exceptional things, and the fact that we were only now boarding the bus from the airport to Disney World only seemed to vindicate the feeling I had woken up with that morning that it was going to be a great day.

Much of the resort was already closed by the time we arrived. But even then, there was much excitement to be had. We found our rooms, and as we wound our way around the Port Orleans Resort, I remember drinking in every detail of the scenery and design, and thinking to myself about how much attention and intent must have gone onto adding all the little details and embellishments. At this time I used to enjoy drawing, but whenever I did, I would become obsessed with details and embellishments. I would draw an airplane, and become fixated on the precise curvature of the engines, the alignment of the ailerons, the number of windows depending on whether it was a Boeing 747 like the one we took to San Francisco or an Embraer like the one we took…

You get the idea. Details were important to me. For me to see that someone had paid enough attention to the details to add all these little decorative Easter eggs, like hidden Mickeys, or a plastic frog on a Lilly pad in a small pond beside the concrete path. To see these little acknowledgments of my attentiveness told me that other people had been paying at least as much attention as I had, which put me at ease, and made me feel welcome and safe, at a time when I had spent most of my life as a foreigner, and a great deal of my time at school being bullied.

Thus assured that I was in a place that was safe and well designed by people who thought like I did, I let loose, skipping happily along as I never did in school for fear of being mocked, and sang songs I had memorized from the inflight children’s “radio station” (which was actually just a recording loop) about fishing worms, the state of Michigan, and carps in tubs.

The next day, I was reunited with my Best Friend in the Whole Entire World, whom I knew from Australia, but who had recently moved to Denver. It was the first time we had seen each other since he had moved away. I had missed his going away party because, in what now seems like a foreshadowing of what was to come, I had been in the hospital with Acute Pan Sinusitis, and after having my immune system wiped out by the drugs, was stuck in protective quarantine.

Together, we tore up the parks, going on rides and eating Mickey out of house and home. This last point proved to be dire foreshadowing, as looking back I can say it was the first time that the earliest symptoms of the medical calamity that would consume my life just six months later were indisputably noticeable. In fact, the symptoms of hunger and thirst were so bad that they caused problems trying to eat off the Disney meal plan. It was the only bittersweet thing about the trip- that it was the last great experience of my life unmarried by the specter of disability and looming death. But that’s a story for another time.

So, back to the question at hand: what does it take to change a life? Was my trip life-changing? Did it change who I am as a person, or alter my future behavior or trajectory in a meaningful way? Hard to say. Despite picking a solidly philosophical topic I’m not willing to sit down for the requisite hours of navel gazing to try and formulate the probable alternate histories if that trip hadn’t gone just so.

It’s tempting, then, to brush it off and say that even though I definitely see that event as one of the high points of my existence, that it never changed who I am at my core. It certainly didn’t change the course of events that were about to happen, which were in retrospect so obviously already in motion. It would be easy to extrapolate that the whole event had no effect on me, but for the fact that I know of a counterexample.

The day itself, more than a decade in the past, has gotten old enough in my mind that parts of it have started to fade around the edges. I don’t, for example, remember which side of the two connecting rooms my brother and I slept in, and which side my parents slept in. The parts I do remember are as much vaguely connected vignettes as they are a consistent narrative, and correlate more to the things that struck me as important at the time than what might be important to the story now. Hence why I can’t tell you what rides we went on, but I can describe the exact configuration of the twisty straw that I had with my milkshake.

One of the things that I remember clearest about that day, one of the things that to this day will occasionally interrupt my stream of consciousness, was the in flight radio. In particular, I recall there being several songs about environmental themes. And I recall sitting there, consciously rethinking my point of view. My train of thought went something like this: The reason I’m hearing this song, which, though decent, isn’t artistically great, is because it’s about a cause, which is clearly important to whomever is picking songs to play.

The kind of causes that get songs written about them, and, despite artistic shortcomings, played constantly at children, are ones that are important to society at large: learning one’s ABCs, being prepared for emergencies, and national crises like a world war (Over There) or pandemic (there was a song about washing one’s hands that was circulated during the Mad Cow scare). That I am hearing this song indicates that it is viewed not just as something of idle interest, but as a crisis of immediate concern.

It was at that moment that I remember mentally upgrading the issue of environmentalism from something that I was merely passively sympathetic towards, to something which I actively supported where possible. Hearing that song on that trip changed my life. Or if it is melodramatic to say that hearing a song single handed lyrics changed my life trajectory, then at least it is accurate to say that hearing those songs at that time provoked me into a change in attitude and behavior.

Would I still have had such a moment of revelation on a different day? Probably, but I doubt I would have remembered it. But as to the question of what it takes to change a life, we are forced to consider how much effort it took for me to hear those songs. There is no good answer here. On the one hand, it took a massive amount of societal machinery to record, license, and select the song, and then see that it was played on the flight that I happened to be on. To do this purposely would require a massive conspiracy.

On the other hand, it requires no small number of miracles from a huge number of contributors to get me the iPad I’m writing on, and the web server I’m posting to, and massive amounts of effort to maintain the global system of communications that allow you to view my words, and yet I’d hardly argue that my writing here is the pinnacle of all of society thus far. Perhaps so, in a strictly epistemological, navel-gazing sense that is largely meaningless for the purpose of guiding future individual actions. But realistically, my authorial exercise here is only slightly more effort than recording my unpolished stream of consciousness.

The truth is, even when I can identify what it has taken in the past to change my own life, I can’t extrapolate that knowledge into a meaningful rule. It’s clearly not that hard, given that it’s happened so many times before, and on such flimsy pretenses. But it also clearly can’t be that easy, or else everyone would already be their best self.

People have in the past attempted to compliment me by insinuating that my writing, or my speeches at events, or my support, have changed their lives. Despite their intentions at flattery, I have generally been disinclined to believe them, on the grounds that, though I may take pride that my writing is decent, it is certainly not of a caliber great enough to be called life-changing. But upon reflection, perhaps it doesn’t need to be. Perhaps the bar isn’t nearly that high. Perhaps, I venture to hope, one does not need to be perfect to change another’s life for the better.

There is Power in a Wristband

This post is part of the series: The Debriefing. Click to read all posts in this series.

Quick note: this post contains stuff that deals with issues of law and medical advice. While I always try to get things right, I am neither a doctor nor a lawyer, and my blog posts are not to be taken as such advice.

Among people I know for whom it is a going concern, medical identification is a controversial subject. For those not in the know, medical identification is a simple concept. The idea is to have some sort of preestablished method to convey to first responders and medical personnel the presence of a condition which may either require immediate, specific, treatment (say, a neurological issue that requires the immediate application of a specific rescue medication), or impact normal treatment (say, an allergy to a common drug) in the event that the patient is incapacitated.

The utilitarian benefits are obvious. In an emergency situation, where seconds count, making sure that this information is discovered and conveyed can, and often does, make the difference between life and death, and prevent delays and diversions that are costly in time, money, and future health outcomes. The importance of this element cannot be overstated. There are also some possible purported legal benefits to having pertinent medical information easily visible for law enforcement and security to see. On the other hand, some will tell you that this is a very bad idea, since it gives legal adversaries free evidence about your medical conditions, which is something they’d otherwise have to prove.

The arguments against are equally apparent. There are obvious ethical quandaries in compelling a group of people to identify themselves in public, especially as in this case it pertains to normally confidential information about medical and disability status. And even where the macro-scale political considerations do not enter it, there are the personal considerations. Being forced to make a certain statement in the way one dresses is never pleasant, and having that mode of personal choice and self expression can make the risk of exacerbated medical problems down the line seem like a fair trade off.

I can see both sides of the debate here. Personally, I do wear some medical identification at all times – a small bracelet around my left wrist – and have more or less continuously for the last decade. It is not so flamboyantly visible as some people would advise. I have no medical alert tattoos, nor embroidered jacket patches. My disability is not a point of pride. But it is easily discoverable should circumstances require it.

Obviously, I think that what I have done and continue to do is fundamentally correct and right, or at least, is right for me. To do less seems to me foolhardy, and to do more seems not worth the pains required. The pains it would cause me are not particularly logistical. Rather they refer to the social cost of my disability always being the first impression and first topic of conversation.

It bears repeating that, though I am an introvert in general, I am not particularly bashful about my medical situation. Provided I feel sociable, I am perfectly content to speak at length about all the nitty gritty details of the latest chapter in my medical saga. Yet even I have a point at which I am uncomfortable advertising that I have a disability. While I am not averse to inviting empathy, I do not desire others to see me as a burden, nor for my disability to define every aspect of our interactions any more than the face that I am left handed, or brown eyed, or a writer. I am perfectly content to mention my medical situation when it comes up in conversation. I do not think it appropriate to announce it every time I enter a room.

Since I feel this way, and I am also literally a spokesman and disability advocate, it is easy to understand that there are many who do not feel that it is even appropriate for them to say as much as I do. Some dislike the spotlight in general. Others are simply uncomfortable talking about a very personal struggle. Still others fear the stigma and backlash associated with any kind of imperfection and vulnerability, let alone one as significant as a bonafide disability. These fears are not unreasonable. The decision to wear medical identification, though undoubtedly beneficial to health and safety, is not without a tradeoff. Some perceive that tradeoff, rightly or wrongly, as not worth the cost.

Even though this position is certainly against standard medical advice, and I would never advocate people go against medical advice, I cannot bring myself to condemn those who go against this kind of advice with the same definitiveness with which I condemn, say, refusing to vaccinate for non-medical reasons, or insurance companies compelling patients to certain medical decisions for economic reasons. The personal reasons, even though they are personal and not medical, are too close to home. I have trouble finding fault with a child who doesn’t want to wear an itchy wristband, or a teenager who just wants to fit in and make their own decisions about appearance. I cannot fault them for wanting what by all rights should be theirs.

Yet the problem remains. Without proper identification it is impossible for first responders to identify those who have specific, urgent needs. Without having these identifiers be sufficiently obvious and present at all times, the need for security and law enforcement to react appropriately to those with special needs relies solely on their training beforehand, and on them trusting the people they have just detained.

In a perfect world, this problem would be completely moot. Even in a slightly less than perfect world, where all these diseases and conditions still existed, but police and first responder training was perfectly robust and effective, medical identification would not be needed. Likewise, in such a world, the stigma of medical identification would not exist; patients would feel perfectly safe announcing their condition to the world, and there would be no controversy in adhering to the standard medical advice.

In our world, it is a chicken-egg problem, brought on by understandable, if frustrating, human failings at every level. Trying to determine fault and blame ultimately comes down to questioning the nitty gritty of morality, ethics, and human nature, and as such, is more suited to an exercise in navel gazing than an earnest attempt to find solutions to the problems presently faced by modern patients. We can complain, justifiably and with merit, that the system is biased against us. However such complaints, cathartic though they may be, will not accomplish much.

This viscous cycle, however, can be broken. Indeed, it has been broken before, and recently. Historical examples abound of oppressed groups coming to break the stigma of an identifying symbol, and claiming it as a mark of pride. The example that comes most immediately to mind is the recent progress that has been made for LGBT+ groups in eroding the stigma of terms which quite recently were used as slurs, and in appropriating symbols such as the pink triangle as a symbol of pride. In a related vein, the Star of David, once known as a symbol of oppression and exclusion, has come to be used by the Jewish community in general, and Israel in particular, as a symbol of unity and commonality.

In contrast to such groups, the road for those requiring medical identification is comparatively straightforward. The disabled and sick are already widely regarded as sympathetic, if pitiful. Our symbols, though they may be stigmatized, are not generally reviled. When we face insensitivity, it is usually not because those we face are actively conspiring to deny us our needs, but simply because we may well be the first people they have encountered with these specific needs. As noted above, this is a chicken-egg problem, as the less sensitive the average person is, the more likely a given person with a disability that is easily hidden is to try and fly under the radar.

Imagine, then, if you can, such a world, where a medical identification necklace is as commonplace and unremarkable as a necklace with a religious symbol. Imagine seeing a parking lot with stickers announcing the medical condition of a driver or passenger with the same regularity as you see an advertisement for a political cause or a vacation destination. Try to picture a world where people are as unconcerned about seeing durable medical equipment as American flag apparel. It is not difficult to imagine. We are still a ways away from it, but it is within reach.

I know that this world is within reach, partially because I myself have seen the first inklings of it. I have spent time in this world, at conferences and meetings. At several of these conferences, wearing a colored wristband corresponding to one’s medical conditions is a requirement for entry, and here it is not seen as a symbol of stigma, but one of empowerment. Wristbands are worn in proud declaration, amid short sleeved shirts for walkathon teams, showing bare medical devices for all the world to see.

Indeed, in this world, the medical ID bracelet is a symbol of pride. It is shown off amid pictures of fists clenched high in triumph and empowerment. It is shown off in images of gentle hands held in friendship and solidarity.

It is worth mentioning with regards to this last point, that the system of wristbands is truly universal. That is to say, even those who have no medical afflictions whatsoever are issued wristbands, albeit in a different color. To those who are not directly afflicted, they are a symbol of solidarity with those who are. But it remains a positive symbol regardless.

The difference between these wristbands, which are positive symbols, and ordinary medical identification, which is at best inconvenient and at worst oppressive, has nothing to do with the physical discrepancies between them, and everything to do with the attitudes that are attached by both internal and external pressure. The wristbands, it will be seen, are a mere symbol, albeit a powerful one, onto which we project society’s collective feelings towards chronic disease and disability.

Medical identification is in itself amoral, but in its capacity as a symbol, it acts as a conduit to amplify our existing feelings and anxieties about our condition. In a world where disabled people are discriminated against, left to go bankrupt from buying medication for their survival, and even targeted by extremist groups, it is not hard to find legitimate anxieties to amplify in this manner. By contrast an environment in which the collective attitude towards these issues is one of acceptance and empowerment, these projected feelings can be equally positive.

The Debriefing

Earlier this month was another disability conference. Another exchange of ideas, predictions, tips, tricks, jokes, and commiseration. Another meticulously apportioned, carb-counted buffet of food for thought, and fodder for posts.

As my comrades working on the scientific research tell me, two points of data is still just anecdotal. Even so, this is the second time out of two conferences that I’ve come back with a lot to say. Last time, these mostly revolved around a central theme of sorts, enough so that I could structure them in a sequential series. This time there were still lots of good ideas, but they’re a little more scattershot, and harder to weave into a consistent narrative. So I’m going to try something different, again.

I’m starting a new category of semi-regular posts, called “The Debriefing” (name subject to change), to be denoted with a special title, and possibly fancy graphics. These will focus on topics which were points of discussion or interest at conferences, events, and such, that aren’t part of another series, and which have managed to capture my imagination. Topics which I’m looking forward to (hopefully) exploring include things like:

– The moral hazard of hoping for a cure: how inspiring hope for a cure imminently, or at least in a patient’s lifetime, can have perverse effects on self-care

– Controversy over medical identification: the current advice on the subject, and the legal, political, social, and psychological implications of following it

– Medical disclosure solidarity: suggestions for non-disabled job applicants to help strengthen the practical rights of disabled coworkers

– The stigma of longevity: when and why the chronically ill don’t go to the doctor

– Why I speak: how I learned to stop worrying and love public speaking

At least a couple of these ideas are already in the pipe, and are coming up in the next few days. The rest, I plan to write at some point. I feel reasonably confident listing these topics, despite my mixed record on actually writing the things I say I’m going to write mostly because these are all interesting topics that keep coming up, and given that I plan to attend several more conferences and events in the near future, even if I don’t get them soon, I fully expect they will come up again.

Lost in Times Square

Times Square is a weird place to wind up by accident. You take a single wrong turn, notice that the amount of billboards and lights is much higher than usual, even for New York, and you look up and around you and realize, wait, is that the flatiron building? Like, the actual one that they have Lego sets of and stuff. It’s hard to tell with all the advertising. It’s hard to focus on anything with all the advertising. But that’s part of the aesthetic, right? You can’t tell for sure because it’s late, but the tourists taking pictures makes you pretty sure you’ve just walked into Times Square by accident.

And then suddenly it feels like you’ve stepped onto a stage for a play that you are not in, and the stage freight of being in the middle of the everything unprepared sets in, and you work to make your exit as quickly and nonchalantly as possible, but you snap a few pictures on the way out, because you’re not sure you’ll be here again soon, and it’s one of those places that kind of demands to be photographed. And you manage to escape just before the full scale sensory overload sets in, before your brain can really process what’s happened.

And as you walk away quickly, but not so quickly as to look suspicious to the visible counterterrorism police presence, you start to register a sort of disappointment. It feels as though you have spoiled something that was supposed to come later. You didn’t come mentally prepared to see any landmarks today, and when you did you didn’t have time to really soak it in, and you know you’ll never get a second impression. But you really have to get where you’re going because you’re already on the verge of running late.

Maybe, you reflect, this is appropriate. You are too busy to enjoy the city renowned for its busy-ness (and also its businesses). Perhaps this is fitting. Perhaps. But it still leaves a bittersweet taste in your mouth.