Tag: disability

Facing Failure

I am in a particularly gloomy, dare I say, depressed, mood upon the eve of my writing this. Owing to the impending blizzard, United Nations Headquarters has been closed, and subsequently the events which I was to attend for the Women’s Empowerment Principles have been “postponed indefinitely”. The news reached me only minutes before I was to board the train which would have taken me into the city, where I had arranged for a hotel room overnight so as to avoid to having to travel during a blizzard.

This left me with an urgent choice: I could board the train, and spend a day trapped in a frozen city that was actively trying to dissuade people from traveling, or I could cut my losses, eat the cost of the hotel room, and return home to ride out the storm there. It probably surprises few that I chose the latter option; the option touted as the more sensible, strategically conservative, objectively correct option. Still, making this choice left me with a bitter taste in my mouth. It leaves me feeling as though I have failed.

I do not like failure.

Actually, that statement is inaccurate, or at least, misleading. I don’t merely dislike failure, in the same way that I dislike, say, sunscreen. No, I hate failure, in every sense of the word. I loathe it, detest it, and yes, I fear it.

This is not to say that I have such strong feelings toward losses. I feel this is an important distinction. Though I do have an adversity to unnecessary losses, sometimes, such sacrifices are necessary. What I hate is trying, making sacrifices, and then failing despite, or even worse, because of those efforts. The important distinction, at least in my mind, is that losses are a strategic principle, and a passing phenomenon, while failure is a state of being, whether for a few moments surrounding a particular exercise, or for a lifetime.

As one might expect, this makes me, in general, rather risk averse. Of course, this itself presents a paradox. Not taking a given risk also entails the inverse risk contained in the opportunity cost. That is to say, by not taking a given bet, you are effectively betting against it. This means that refusing to accept risks is always inherently itself a risk. So, for example, one cannot accept a zero percent chance of food poisoning without not eating altogether; and if one were to attempt to do so, they would quickly find themselves confronted by the more urgent problem of starvation.

The blizzard that closed the UN put me in a no-win situation. As a rational person, I can accept this, and act to cut my losses. Either I canceled my trip, resigned myself to staying at home, and ate the cost of my hotel reservations, or I purchased my train ticket, defied government instructions to stay home and avoid travel, put myself in danger, and spent the day trapped in a hotel room. I understand rationally why I chose as I did, and rationally, maintain that I made the correct decision. Yet I cannot escape the feeling that in choosing to abort my plans, I have failed my objective. Even if there was nothing to gain by getting on the train, I cannot suppress the feeling that my conscious choice invited some moral failing.

Some cursory research suggests that this particular feeling is not unique to myself, nor is it a new field of philosophical musings. Humans feel more emotional and moral responsibility for acts which are consciously undertaken than for merely following existing plans. This feeling is so prevalent it carries legal weight; binding contracts cannot be made by failing to decline an agreement; they require active assent. This might explain why I feel particularly upset with myself; If I had made no choice, then any perceived failure could only be an act of God, and out of my control. By making a conscious decision to cut my losses, I made that result a personal consequence, at least to my subconscious mind.

This leaves me at something of an impasse. I know why I am upset, yet can do little to console myself except to distract and reassure the nagging elements of my unconscious mind that I made the correct decision. I am left in conflict with myself, and left acutely aware of the fickleness of my own mind. While I suppose that this state of affairs is strictly preferable to feeling upset and not understanding why at all, I still cannot bring myself to feel in any meaningful way confident about myself in the present tense, particularly as these most recent reactions would seem to indicate that I might not be the single-mindedly rational being that I like to pretend that I am.

As I have indicated previously, I have very little intrinsic self confidence, at least in the manner which most people seem to expect that I ought. For whatever reason, I cannot seem to raise such self-evident feelings of self worth, and therefore, when I project such feelings, it is borne not of some internal passion, but extrinsic, statistical calculation. I base my self-assessment not on my own feelings, nor on others’ opinions, but on data and milestones. And though I feel that this generally gives me a better handle on the limits of my abilities, it also means that when I put my mind to a particular objective, and yet still fail for whatever reason, it becomes not only a momentary setback, but a point of evidence against my worth as a human being.

This can, and historically has, resulted in a mental loop whereby a temporary failure, such as a meeting which I had my aspirations set upon being cancelled by a snowstorm, leads to a general hardening of outlook, which in turn causes me to shift to the back foot, acting more conservatively, and taking fewer risky opportunities. Consequently, I wind up having fewer major victories to celebrate and reassure myself, and am instead left to reflect upon all of the opportunities which I missed. Because I was led to skip these choices by seemingly rational means, I cannot regret individual choices, but rather categorize them as mere symptoms of a general moral failing. These reflections promote further self-doubt, further strategic conservatism, and so on.

So, what can I do about it?

With the help of family and friends, I have come to realize that this is a viscous cycle that represents many of the worst and most self-destructive aspects of my personality and manner of thought. Of course, recognizing this fact consciously is the easy part. Hindsight is perfect, after all. The hard part is determining how to counter this cycle.

Historically my solution to such problems has been to throw myself into work, especially school work. This serves a dual purpose. First, if I am working hard enough, I do not have the time nor the energy to stew over my situation in more general terms. Second, it gives me a sense that I am accomplishing something. From primary through early high school, this approach has generally worked.

However, more recently, as the school has continued to demonstrate its gross incompetence in accommodating my physical disabilities, and as they have become increasingly distraught over the fact that my disability has not healed itself by magic, it has apparently occurred to the school administration that the correct way to inspire me to overcome medical impossibilities is to continually evoke shame each time my medical issues cause me to miss a deadline. Exactly what they aim to accomplish through this pestering continues to elude me. But in any case, this state of affairs means that greater effort on my part is more often scolded than rewarded. For, it seems, every time I attempt to reach out for clarification and assistance, I am subjected to a lecture on “personal responsibility”.

Because the school administration is apparently so “forward thinking”, and therefore does not believe in disability whatsoever, I am told that the fault for my failures is not, cannot, lie in my disability, but only in my personal moral failings. I am told by special education professionals that if I were truly dedicated to my academic performance, that my chronic diseases ought not have any impact on my life whatsoever. My promises that I will do my utmost given what I have to work with fall on deaf ears, because, allegedly, if I were to truly do my utmost, I would already be done on my own.

Needless to say, this experience is extremely stressful, and only deepens my sense of failure, self-hatred and anxiety. It should surprise no one that I am not terribly productive under such conditions, which only exacerbates the problem. Thus it comes to pass that throwing myself into schoolwork and attempting to prove myself wrong; to prove that I can indeed overcome opposition and be successful, only leads to more evidence that I am a failure.

I have looked, and am still looking, into various strategies to deal with this cycle moving forward. One strategy has been to write, and to post here. Another has been to give myself permission to engage in short “micro-vacations” as I call them, or “sanity-breaks” as my doctors refer to them. These short periods can last anywhere from a few hours to a few days depending on the severity of my initial state, particularly as they tend to coincide with when I am most physically fatigued*, but the important part is that they remain constrained to a specific time instead of drawing out into a general malaise. During this time, I temporarily do away with all pretense of productivity, and allow myself to engage in whatever petty amusement strikes my fancy.

*Sidenote: the overlap between physiological issues and mental symptoms is a recurring theme, making meaningful treatment for both all the more challenging. After all, is it really paranoia if your statistical chances of dying are vastly increased? The consensus thus far is that it isn’t. This is the reason why, despite having all of the symptoms, I do not technically qualify for any mental health diagnosis; because in my case, the source is obvious and completely justified.

In this respect, the fact that the same blizzard which set me on this spiral also shut down most everything in the vicinity comprises a silver lining of sorts. Obviously, there is no magic bullet for irrational feelings of failure. But perhaps that is beside the point. Perhaps the point of overcoming this feeling is not to wind up standing triumphantly atop the pile of slain emotions, but to reach a peaceful stalemate. I do not necessarily need to feel good about the fact that I could not accomplish my goals; merely be able to accept it without it destroying myself. Perhaps it might be enough to be able to calmly analyze and discuss my thoughts in writing, without necessarily having to reach a decisive conclusion.

Reflections on International Women’s Day

I stated previously that I intended to bring this blog offline once again in solidarity with the Day Without Women Strike for International Women’s Day on March 8th. Two things have convinced me to alter my plans slightly. First, the strike organizers seem to be calling for only women to actually strike today, and are encouraging men to participate in other ways. This is fair enough. After all, it’s not my voice being put down, and I would have a hard time coming up with a tangible example of a time that gender discrimination has impacted me directly (It impacts me indirectly all the time, by holding back scientific progress by the selective suppression of certain groups’ advancement, but I digress).

Second, and arguably more important, is the point that, while striking and industrial action may be effective means of grabbing headlines, the point of these exercises is not to elicit silence, but conversation. Given that people seem to have this notion that I am a moderately talented communicator, and have chosen to listen to me, it stands to reason that a more appropriate response might be to attempt to add to the conversation myself.

It’s easy not to notice something that doesn’t affect oneself directly. Humans, it seems, possess an extraordinary talent for ignoring things that they feel do not concern them, particularly where knowledge of those things would make their lives and understanding of how the world works more complicated. This is probably a good thing on the whole, as it allows us to get through the day without having an existential crisis over the impending heat death of the universe, and feeling continually depressed about the state of affairs for our fellow humans in the developing world. On the other hand, it also makes it distressingly easy for us to overlook challenges to others when they do not have a direct impact on us.

Recently, I was invited to attend an event regarding the ongoing development and implementation of the Women’s Empowerment Principles at the United Nations. Now, as much as I like to believe that I am a progressive person capable of and inclined to provide and advocate for equal opportunity, it is impossible to deny the simple fact that I am male. And while I can name all kinds of discrimination that I have myself encountered, none of them relate to my sexual and gender identity. And so when it comes to suggesting ways to remedy present injustices, I do not really have a solid background to draw from.

I probably could have gotten away with what I already know. After all, with my limited experience in educating others on specific issues, and with my commitment to the principles of equality in general, surely I have enough context to be able to, if not contribute on my own, then at least, to pay homage to the general notion of women’s struggles?

Perhaps. But, I know enough people whom I respect, for whom this is a serious issue worthy of dedicating entire careers to. Additionally, I like to make a point to be an informed interlocutor. It is my firm position that all opinions worthy of serious discussion ought to have a firm factual and logical backing. And given that, in this case unlike most others, I do not have a personal background experience to draw upon, it seems only correct that I do my due diligence research so that I may make responsible and informed conclusions.

Thus, it transpired that I set myself the goal of becoming, if not an expert, then at least competent, in the field of gender relations and sexual inequality around the world in the space of just over two weeks. A lofty goal, to be sure, but a worthy one. My reading list included an assortment of United Nations, governmental and NGO reports, various statistical analyses, news stories, and a few proper books. Actually, calling it a reading list is a tad misleading, as, in order to cram as much information into as short a time as possible, most of the material in question was consumed in audio format, played at double or triple speed. This is a very effective way of gleaning the key facts without having to waste time on wasteful frivolities like enjoying the plot.

Most of my initial digging started in various UN organizations, chiefly the media center of the World Health Organization. While not always as in depth as respective national organizations, the WHO is useful inasmuch as it provides decent cursory summaries for the global perspective. What was most fascinating to me was that there were surprisingly few hard statistics. The biggest problem listed, particularly in the developing world, was not that women received a necessarily lower quality of healthcare, but that most did not receive health care at all, and therefore properly compiled statistics on gender discrepancies in health were notoriously hard to come by. Rather than telling a story, the data simply does not exist.

In a bitter irony, the more likely data was to exist for a specific region, the less likely significant gender discrepancies were to be shown to exist, at least in healthcare. That is to say that by the time that rigorous evidence could be compiled, the worst elements of inequality had been subdued. This makes a kind of sense. After all, if the problem is that women aren’t being allowed to participate in public, how exactly are you going to survey them? This also hinted at a theme that would continue to crop up: different regions and cultures are starting at tackling gender inequality from radically different starting points, and face accordingly different challenges.

My second major revelation came while listening to I Am Malala. For those who may have been living under a rock during that timeframe, here is the background: In 2012, Malala Yousefzai, a human rights and women’s education activist in rural Pakistan was shot by the taliban, sparking international outrage and renewed interest in the plight of women in the Middle East. Malala survived after being airlifted to the United Kingdom, and has since garnered celebrity status, becoming a goodwill ambassador for the United Nations’ women’s empowerment initiatives.

I have still not yet made up my mind on whether I will go so far as to say that I liked the book. I do not know that is the sort of book that is meant to be liked. I did, however, find it quite enlightening. The book is a first person biography; a kind of story that I have never been quite as interested in as the classic anecdote. If I am completely honest, I found most of the beginning rather dry. The story felt to me as though it had grown rather repetitive: Malala would have some dream or ambition that would seem fairly modest to those of us living in the developed world, which would naturally be made extremely contentious and difficult because she was a girl living in her particular culture.

It got a the point where I could practically narrate alongside the audiobook. And then, halfway through the twelfth or so incident where Malala came up short owing to her gender and her culture, it hit me: that’s the whole point. Yes, it is tedious, to the point of being frustrating to the narrative. That’s the point here. No part of this book would have happened, if not for the constant, grating frustration of sexist attitudes and policies. The story couldn’t progress because of those obstacles, and every time it seemed like one hurdle had been surmounted, another one cropped up. Because that’s what it’s like. And if I, the reader, was frustrated trying to hear the story, just imagine what it would be like to deal with the real deal.

A second revelation also occurred to me. In trying to tell of my tribulations in living with physical disabilities, I have often been accused of overstating the scope of their impact, to the point of copping blame for stirring up unnecessary trouble. People believed, or at least, suspected, that while life might be more difficult in a few select areas, surely it couldn’t effect absolutely everything in the way that I suggested it did. Perhaps, then, the problem lay not with the actual task at hand, but in the fact that my perception had been tainted. Perhaps I was not truly as disabled as I claimed, but merely suffered from a sort of persecution complex. I realized that I had unintentionally, unconsciously, made the same mistake in my reading of Malala’s story.

This also helped to answer another important question: In the developed world, we often hear bickering over to what degree we still “need” the women’s empowerment movement. After all, we have full suffrage, and equality before the law. Discrimination on the matter of sex is illegal, if it can be proven. Given how much better life is for women in the developed world than the developing, is it reasonable to expect more? Are these western advocates simply suffering from a persecution complex? Certainly there are those whose concerns are more immediately applicable and actionable than others, and certainly there are those who will insist no matter how much is done, that it isn’t enough. Such is the nature of politics, and on this the women’s empowerment movement in the developed world is not any different from any other political movement. But on the general question over whether genuine, actionable, inequities exist, it seems now far less unreasonable to me to accept that there may yet be more work to be done than I might have initially been led to believe.

I expect that even this conclusion will be contentious. I expect that I shall be told in short order that I have drawn conclusions from the data which I have aggregated which are faulty, or else that the data itself is biased or misleading. On this point I concede that I am still quite young in my in-depth study of this particular field, and, as mentioned previously, far better minds than mine have devoted entire careers to ironing out the finer points. Reasonable minds may, and indeed do, disagree about specifics. However, if there is one thing which my cursory research and analysis thereof has confirmed in my mind, it is that, on matters of general policy, I would rather err on the side of empathy, choosing rather to be too trusting in the good faith of others, than to ignore and unintentionally oppress.

It follows, then, that I should find myself wholeheartedly endorsing and supporting the observation and celebration of today, International Women’s Day, and reaffirming my support for continuation and expansion of the UN’s Women’s Empowerment Principles.

Open Letter: Betsy DeVos

Today at school there was an informational session regarding the policies of the new department of education, and a letter-writing session to the new secretary of education. Unfortunately, in a bitter and illuminating irony, I was prevented from attending and participating owing to a flare-up of my disability. I have therefore resolved to make my point via online open letter.

Madam Secretary,

If I am completely honest, I hold reservations that you are qualified to hold your current post. Your lack of experience with public schools at all is disturbing; and your characterization of education as an industry rather than the duty of the government in protecting the inalienable right of the citizens in accordance with both international law and domestic precedent, is alarming.

With that said, I shall invite you to prove me wrong. I remain open to the possibility that I have underestimated your abilities and convictions, and those of your cabinet colleagues. In particular, your short-lived, halfhearted attempt to prevent the rollback of existing protections for transgender students is quite heartening, despite its failure. However, I should have to inform you that merely paying lip service to the idea of equal protection is not nearly enough, particularly for one who has sworn an oath to uphold it.

Because I do not expect much in the way of expanded services from your office, the main point of your tenure will be to ensure that existing protections for minorities and those such as myself with disabilities are enforced. Your job is to stand up for those who cannot stand for themselves. This is an enormous responsibility, and one that is arguably more critical to the continuing function of our democratic society than the jobs of your other colleagues.

I will hasten to point out, since the papers have brought it to my attention, that the primary motivation for your backing down during the standoff over transgender protections owed to your job security, that your position is most likely more secure than you may be led to believe. Yours is a senate-confirmed position. You, who were evidently the most qualified candidate the president could muster, only barely made it through senate approval. I do not expect the same senators would take kindly to you being asked to resign over adhering to your legally-mandated duty. I urge you to point out this matter to your colleagues the next time you feel pressured to compromise on principles.

In closing, I urge you, Madam Secretary, to prove me wrong; to demonstrate that you are qualified to uphold your constitutional and legal obligations. Prove that you are willing to put moral principles before money and politics. Give me reason to believe, as you put it during your confirmation hearings, that you “fully embrace equality [and] believe in the innate value of every single human being, and that all students, no matter their age, should be able to attend a school and feel safe and be free from discrimination.” Prove that you will stand by your words and enforce the civil rights legislation that ensures that our society can yet function.

Sincerely,
The Renaissance Guy
Registered independent voter, Blogger, and Student

Nailing the Colors

“Throw your soldiers into positions whence there is no escape, and they will prefer death to flight” – Sun Tzu, The Art of War.

Pardon the French

I often find that the hardest part of traveling for me is making the actual decision to commit to traveling. I mean, actually getting places is hard too, doubly so if I have to go through some kind of screening, seeing as how my medical devices, being both electronic and attached to me, set off alarms at every checkpoint, but over the years I’ve grown used to this.

The hardest part of traveling is determining whether this particular event is worth putting my metaphorical money where my mouth is. Not because money, or even travel time, are acutely scarce in my case, but rather because travel, especially in my case, requires a great deal of planning, and entails a considerable health risk.

The trouble with galavanting across the globe lies in the basic physiological fact that my body, unlike most, is not medically self sufficient. Simple sustenance is not enough for me to stave off death; I require a constant and complex life support regime to travel with me, with replacement and backup parts. Certain aspects of this baggage must be refrigerated, all of it requires special hazmat disposal, and from time to time, I still need to cease my activities in order to plug my cyborg components into a wall socket.

In addition to all of this routine hassle, I also must remain vigilant about the very real possibility of a more acute crisis. With increased activity and exposure to heretofore unknown pathogens comes an increased risk of medical catastrophe. And being far from my home and those doctors that are most familiar with my unique conditions amplifies the likelihood that, if something does go wrong, it will become critical.

I am a person who tends to overthink. I like to have the complete information before making a decision, and I like to take my time in doing so. When faced with uncertainty, I am broadly inclined to hedge my bets. A lifetime of chronic illness has taught me great appreciation for the value of playing one’s cards conservatively. This is, after all, the nature of medicine. Err on the side of caution. Prevent rather than cure. Rest, recuperate, and live to fight another day.

Yet this mindset is rather incongruous with modern travel. Traveling requires visas, reservations, tickets, invitations, and scheduling, all of which require commitment. One has to be able and willing to certify that they will be in a certain place on a certain day for a certain purpose, regardless of whatever extenuating circumstances may crop up between now and then. There is no option on airline bookings, or hotel reservations, to say “Yes, I will be there on February 24th with two other guests, unless of course one of us has a major health crisis or somesuch calamity.” Rather, it is “I will be there on February 24th with precisely two others, damn the torpedoes.”

This oversight seems to stem from the mistaken assumption that I have control over my life inasmuch as scheduling is concerned. That perhaps I was dealt a poor hand to begin with, but now that I have, it is solely my power to determine how I play my hand. This is absolutely not the case. I have no more control over the timing of my health problems than the average American does over the use of the US nuclear arsenal in an international crisis. That is to say, I can make my wishes known to the powers that be, and I can, on occasion, take indirect action to influence the overall outcome, but on the whole, my role is purely reactive.

In truth, I think this is part of what is so exhilarating to me about travel. Even in something as mundane as traveling across the state to visit friends, I am taking a gamble. I am nailing my colors to the mast, and committing to an offensive battle instead of waiting for my illness to strike first, and for me to react. Each one of these battles carries the distinct risk that it may be my last, and so I must choose my battles carefully.

With this in mind, I have decided to commit to making an appearance at NerdCon: Nerdfighteria in Boston this weekend. I plan to make myself identifiable with an oversized button of the compass-and-pencil seal. If my recently acquired and as yet untested means of button production work as envisioned, I will have some quantity of such buttons to distribute. In other words, come and say hi!

Keeping Promises

I have just been informed of a setback to one of the research programs which I have had my eye on as a possible answer to my disability. The setback is not a natural discovery of some scientific obstacle, but rather a political hurdle put in place by the new American presidential administration.

A researcher who had been tapped to work in the United States on curing several deadly disease, including tuberculosis, rheumatoid arthritis, and Type 1 Diabetes, was denied boarding in Frankfurt on the grounds that she was an Iranian national [1][2].

What ever happened to “a big, fat beautiful door right in the middle of the wall” for the “good people” who “have recommendations from people”? This is, after all, the alleged basis for the new executive orders [3]. The researcher in question held a doctorate from the École Polytechnique Fédérale de Lausanne, and was slated to work at Harvard on the personal recommendation of Dr. Soumya Raychaudhuri. Does this not sound like a good person wth recommendations?

This isn’t a question of how to process those who have come to the US illegally. This is someone whose visa was approved, who had even traveled to the US previously [1][2]. This is about America keeping its promises. Because if the United States government decides it can get away with breaking its word whenever it feels like it, how are foreign governments supposed to trust that the US will uphold its end of the bargain when, say, negotiating trade deals, or even security treaties? How are foreign leaders supposed to trust our dealmaker in chief when he decides to renegotiate all of current treaties? This is already in the minds of our European allies, who see this kind of promise-breaking as a destabilizing move [4].

Moreover, if the US government decides it can break its own rules when dealing with foreigners, what is to stop it from deciding it has to keep its promises to its own citizens? We don’t have to imagine an answer, because the State Department has already given us one, saying the dual citizens will be subject to the ban [5].

That is to say that American citizens who are of certain ancestry will not be permitted reentry to the country. This is, frankly, horrifying, and, perhaps ironically, makes me glad I have a second passport. Although I do not plan to leave the country over this latest debacle, I can now say with confidence which I would pick if forced to choose.

Works consulted:

1) Kliff, Sarah. ““But I have a valid visa:” An Iranian researcher barred from flying to US for new job.” Vox 28 Jan. 2017: n. pag. Web.

2) Gans, Felicia. “‘I told him I do have a valid visa, but he told me that it doesn’t matter.’.” Boston Globe. N.p., 29 Jan. 2017. Web. 29 Jan. 2017.
https://www.bostonglobe.com/metro/2017/01/28/told-him-have-valid-visa-but-told-that-doesn-matter/yttREc10s5cc7yjX3d48hJ/story.html

3) Johnson, Kevin R. “Trump’s ‘Big, Beautiful Door’ Is a Big, Beautiful Step in the Right Direction.” Time. N.p., 29 Oct. 2015. Web. 29 Jan. 2017. <http://time.com/4092571/republican-debate-immigration/>.

4) Smale, Alison. “European Leaders Reject Trump’s Refugee Ban as Violating Principle.” The New York Times. N.p., 29 Jan. 2017. Web. 29 Jan. 2017. <https://www.nytimes.com/2017/01/29/world/europe/trump-executive-order-europe-merkel.html?_r=0>.

5) Jordan, Miriam, Ian Lovett, and Alejandro Lazo. “Donald Trump’s Immigration Order Sparks Confusion, Despair at Airports.” The Wall Street Journal. N.p., 29 Jan. 2017. Web. 29 Jan. 2017. <http://www.wsj.com/articles/donald-trumps-immigration-order-sparks-confusion-despair-at-airports-1485709114>.

Engineering Equality

If you didn’t know already, I occasionally advocate for causes I believe in. More rarely, I go so far as to actually volunteer to go meet with people. I am not exactly a people person, so I take these kinds of engagements quite seriously. One particular role I have played is acting as an effective salesperson for the Nightscout Foundation. Amid other things, one of the activities I do is show people how to build little battery powered LED lights from off-the-shelf hardware components. It’s meant to be a proof of concept, as our foundation is a maker-movement DIY group. The notion is that if you can assemble a simple LED with a little instruction, you have all the qualifications to go on and build anything. If you can build this, you can engineer your own solutions to your chronic illness.

For the adults and those who are interested in our foundation, it provides a great segue into talking about building your own treatment setups. For the kids and the casual observers, it’s a great feel-good moment and a pleasant memento. But being a DIY engineering project, even if a relatively simple and small scale one, has inspired a great variety of reactions in a great variety of people.

Some you might expect. For example, kids tend to be more enthralled with the idea of a fun project than the adults, who are by and large more interested in free stuff. These are trade shows where we’re presenting, after all. Some are a bit less expected though.

For one thing, I’ve distinctly noticed that some of our oldest visitors also seem to be the most interested in building something themselves. I had one elderly lady at the American Diabetes Association conference. She had a walker and wore an eyepatch on one eye, a pair of thick glasses over both. Her hands shook as she tried to grip the components. In her place, I might have well given up. Yet she persisted in doing it herself. Seeing the LED bulb light up, she herself lit up to match.

At the same conference was a man in a wheelchair. His hat proclaimed he was a Veteran of several different conflicts. He did not seem awfully happy to be at that particular conference on that day. Yet he was overjoyed to be able to build a simple little gadget, which he used to decorate his own wheelchair. After completing his first one, a red bulb, my mother pointed out that he ought to build a green bulb one as well, for port and starboard on his wheelchair. He agreed wholeheartedly. I don’t think I have ever seen a man more proud of his wheelchair.

Another demographic trend which I have noticed recently, which I would not have expected but perhaps should not be so surprised at: I have noticed that while children of both sexes participate in roughly equal numbers, on the whole, the girls have seemed more interested. It’s hard to quantify and difficult to explain, but I see more of that familiar gleam – that hope – when I give my whole spiel about being able to build anything.

This is of particular interest to me, because this anecdotal experience seems to be in line with some of the larger picture about STEM-related skills in American students. The data, which admittedly is still quite limited, has suggested that young girls may actually be better equipped in terms of scientific than their male counterparts, at least at a young age. This, despite overwhelmingly male-dominated workplaces in STEM fields.

There are of course other possibilities. Perhaps girls at trade shows are simply more interested because it is an arts and crafts project as much as an engineering one. Perhaps they see other people wearing their LEDs and don’t want to miss out on the latest fashion. But I don’t think so. Also, it’s worth nothing, none of these scenarios are mutually exclusive.

If this pattern is true, then it points to some very dark truths about our society and culture. It suggests that not only are we shortchanging women, and likely also many other traditionally marginalized groups, but from a technological development standpoint, we are robbing the world of their opportunity to improve life for everyone. Still, I remain hopeful. We can’t undo the past, and we can’t change our social order and culture overnight, but we can set a positive example and improve outreach. For my part, I intend to continue my work promoting DIY engineering solutions. Do It Yourself is, after all, completely gender neutral and inclusive.

The truth is that the solution to achieving genuine equality- between genders, ages, races, and all the other things that divide us – lies in enabling those that are interested and able to access the necessary resources to advance both themselves, and humanity as a whole. The solution to equality lies not in legislation, but in education. Only by encouraging self-motivated DIY engineers can we expect to achieve the egalitarian dream that we have for so long been promised.

Do You Wanna Build a Castle

Pictured below is my most recent project. It requires no real explanation.


I happen to like Lego bricks, perhaps more than is considered appropriate for one my age. They are one of my preferred media for experiencing the joys of creation, which I have previously mentioned as one of the major sources of joy in my life. I find that they provide a good midpoint between creating still images, which in my cases involves mostly sketches, and writing stories in text. Still images convey singular moments, or else discrete concepts. Writing, although it can be used to describe a setting in a single point in time, is generally better adapted to stories. Writing also usually requires a level of cognitive function that is, if not above, then at least, distinct most other options.

My first real experience with lego bricks was while I was hospitalized and recovering from severe neurological trauma as a result of medically-unexplained encephalitis. As part of my care, I was referred to “play therapy”, that is, play-based cognitive therapy. In my case, this meant being observed when given a tub of Lego bricks. I have come to regard this medicinal approach as ironic, given that Lego is derived from butchered danish meaning “play well”.

Whether it was the play therapy or the cocktail of drugs, I did recover, and, much to the pleasant surprise of my cognitive therapists, regained virtually all of the ability I had lost. Once I began to feel slightly better, I began to experiment with the up of bricks I had been assigned. I began to build structures atop the rolling tray table that was supposed to hold my food at mealtime. Eventually I was granted an extra tray solely for my creations. My myriad specialists were always impressed with my construction progress each time they came in for rounds.

Having truly nothing else to do, seeing as my access to the hospital’s computer entertainment systems had been suspended, and my TV time restricted after I had my first seizure, I began to devote more time to building a comprehensive city. It was escapism, and it was encouraged by all of my factors. Being limited on the number of bricks, I began to experiment with various methods of creating facades and Potemkin structures. I used the space inside these structures to smuggle extra condiments, seasonings, and small packages of foodstuffs.

Many weeks later, when my neutrophils plummeted to a point that I was in more imminent danger in the hospital than at home, I was, without buildup or ceremony, booted out of the hospital. Much to my disappointment, my grand City was disassembled and taken away (though I did get a passing chuckle upon seeing the look of the staff’s faces when discovering that my city contained in it more snacks and condiments than the ward kitchen). My parents were given a list of prescriptions, a list of symptoms to look out for, and a phone number to call if they should notice me having another seizure, but other than that, we were on our own.

As soon as I got my hands on another Lego set, I began building anew. Part of this was the obvious desire to reconstruct and avenge my previous creation. Mostly, though, it was a sense of comfort. It was something I could do, even in this strange new world of having to take pills that slowed down my thinking and avoiding strobes on the television. I could still build something, and I could do it in a format that was universal. Even if not everyone understood my specific logic of city planning, everyone could recognize an obvious house, or a farm, or a city park.

Looking back, it was about two years before my new city eclipsed that which I had built up using the hospital’s resources. My city went through its boom and bust cycles as I saved up my pocket money for new sets, and as I discovered new ways of structuring my buildings. While I enjoyed playing with the minifigures, constructing and imagining fierce battles between Star-Wars shock troopers and entrenched medieval wizards, what I enjoyed most of all was working on the city as a whole. Whether it was adding new buildings, or converting an unused plot into a massive skyscraper, or rerouting traffic to make it more efficient, I thrived on making the whole thing grow.

As time wore on, and the long term effects of sudden, massive brain trauma began to surface, I came to rely on my city as a place of solace. Perhaps I might be temporarily unable to read and write or even speak coherently. Perhaps a migraine had dashed all my plans to be productive and meet my goals. Perhaps I had simply had a bad day and required a break. Whatever the case, as long as I could manipulate my fingers with some degree of accuracy, I could build. I didn’t need to explain myself, or even conform to a set standard. I could build what I wanted. I could design my stories in three dimensions, not having to rely on my memory or my ability to convey concepts using words.

Having a massive Lego metropolis in our basement has become something of a self-fulfilling prophecy. Just like with any major collectible hobby, Lego sets have become the obvious choice for birthday and Christmas presents. Friends comment on the size of our display, which ensures that I make an effort to add to it, or at least, change it up, before people come over. It is a virtuous cycle. Personally, I do not believe our collection is particularly large. It always feels to me as though we are just a few sets short of a genuinely remarkable construction. On the other hand, we do have the largest collection of any person or family I have personally met.

Today, our city comprises four separate tables, and is divided loosely into zones. There is one zone which is a permanent combat scene, where an anachronistic stew of Star Wars troops and vehicles seek to dislodge the well-entrenched rebel base, comprised mostly of outdated fighters and crossbow-wielding knights. There is a touristy recreational area built around the newly-constructed Cinderella’s Castle and loosely based on the planning style of Disney World. There is the main citadel and downtown area, abound with skyscrapers and inner city traffic. Finally, there is the uptown district, comprising the theatre and historic castle fortress, as well as some urban industrial zones. All of them are constantly growing and changing. It is a constant, giant story, handmade, and never truly completed. It is simultaneously a metaphor for my own struggles, and a contrast to them.

On the Affordable Care Act

“Heal the sick, cleanse the lepers, raise the dead, cast out devils: freely ye have received, freely give.” – Book of Matthew 10:8

“Here then is the origin and rise of government; namely, a mode rendered necessary by the inability of moral virtue to govern the world” – Thomas Paine, Common Sense

I do not particularly like the Affordable Care Act. It is unwieldy, needlessly complex, and yes, it costs more than it probably needs to. But at the same time, and this is crucial, it is a vast improvement over the previous state of affairs. Not only this, but the continued coverage of our most vulnerable citizens by the Affordable Care Act is not only a moral necessity, but is critical to maintaining our democratic way of life.

While there is no law that states that a republic need aim to suppress inequality, there is a basic rule in economics and sociology that states that those who are truly impoverished; that is, those who cannot meet their basic needs, also cannot reasonably participate, in an informed way, at least, in a democratic process [6][7]. After all, if one needs to work continuously in order to continue to pay for life support, when exactly is one expected to register to vote, research candidates, call representatives, and actually vote?

It follows, then, that if the function and duty of the democratic-republican government is foremost to safeguard our inalienable natural rights against tyranny, as the founding documents and rhetoric of the United States seem to maintain [8], then the same government also has a mandate and a duty to ensure that citizens are at least not so crushed by poverty and circumstance as to effectively impugn upon those rights.

Such is the moral and constitutional basis for the Affordable Care Act. And while it may be argued that the program is not necessarily as efficient as we feel it perhaps ought to be, these are problems to be solved with a scalpel rather than a hatchet. The simple fact remains that without any sort of similar protection, millions of Americans afflicted with chronic conditions would not be in a state to exercise their rights to self-determination. Given that all but the most ardent anarchists maintain that it is the duty of the government to defend the rights of its vulnerable citizens, it follows that it is also the responsibility of the government to, if not provide healthcare outright, then to at least ensure that it does not become so much of a crushing burden as to prevent the free exercise of citizens’ rights.

To the patriotic, there is also the matter of showing that the United States is a civilized, developed nation capable of taking care of its citizens. It is no secret that the American healthcare system ranks extremely unfavorably with its fellow developed nations, and has often become the butt of jokes in such countries [9]. While the Affordable Care Act will in no way solve this discrepancy singlehandedly, it does go a ways towards closing the gap.

There are, of course, other benefits to a robust and accessible medical system more enticing to the self-interested. For starters, ensuring widespread, if not universal, coverage, will help mitigate the effects of the next major disease outbreak [5]. Given the distinct possibility that the next major outbreak will also be the pandemic that brings human civilization to the brink of collapse, a la the bubonic plague, having a healthcare system which allows for the timely containment and treatment of infected individuals is probably a worthwhile investment [1][5]. Given this, it is not unreasonable to equate the funding of the Affordable Care Act to that of Civil Defense, now under the auspices of Homeland Security. Notably, very few seem eager to defund the DHS.

It is also worth reiterating that the additional government investment in healthcare subsequent to the Affordable Care Act, has in fact brought in net savings. It is estimated that each dollar invested yields a return of approximately $1.35 [2],either in direct savings, fewer welfare payments, or increased tax revenues from newly enabled workers. Money spent on preventative care, such as vaccinations, well-visits, and related, which are notably the things least likely to be purchased by those who are not covered, yield returns of $5 for every $1 invested [3]. Spending on care for those with chronic preexisting conditions, who are only covered in the first place because of the Affordable Care Act, yield an ROI of approximately $3 for every $1 invested, not including additional benefits gained from the prevention of such conditions in vulnerable populations [1][2][4].

But all of this pales in comparison to the moral imperative to help one’s neighbor. Fascinatingly, many of the same figures who now exalt the Bible as the ultimate source of governmental direction seem to also be selectively ignoring the biblical mandate to help the poor and vulnerable. The Bible, for its part, is quite clear on the responsibility for all Christians; indeed, for all moral people, to provide for the humane treatment of the sick.

When I lived in Australia, healthcare was provided by the government as a matter of course. After all, how could a government provide freedom to a citizenry that was crippled by disease? How could anyone support a government which had the means to save the lives of its citizens, but chose not to for political reasons? How could anyone be proud of, or be expected to serve that country? Providing healthcare was viewed as part of what it meant to be a functional, first-world government.

As stated previously, I do not particularly like the Affordable Care Act. I think it was a lily-livered compromise. I am in agreement with the Universal Declaration of Human Rights that health, like life, liberty, and the pursuit of happiness, are inalienable human rights, and that anything short of a full guarantee to protect these rights is a failure of our government and society at a fundamental level. However, given the choice between the Affordable Care Act and what existed before it, I feel compelled to defend the ACA. If is a stopgap, to be sure, and an unwieldy one at that, but until such time as a reasonable replacement emerges, it is in the best interests of all involved to ensure that it remains in effect.

Works Cited:

1. “How Americans can get a better return on their health care investments.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, n.d. Web. 13 Jan. 2017.

2. Abrams, Melinda Abrams, Stuart Guterman Guterman, Rachel Nuzum Nuzum, Jamie Ryan Ryan, Mark Zezza Zezza, and Jordan Kiszla Kiszla. “The Affordable Care Act’s Payment and Delivery System Reforms: A Progress Report at Five Years.” (2015): n. pag. Web.

3. Armstrong, Edward P. “Economic Benefits and Costs Associated With Target Vaccinations.” Journal of Managed Care Pharmacy 13.7 Supp B (2007): 12-15. Web.

4. “Sustained Benefit of Continuous Glucose Monitoring on A1C, Glucose Profiles, and Hypoglycemia in Adults With Type 1 Diabetes.” American Diabetes Association. ADA, n.d. Web. 13 Jan. 2017.

5. “Infection prevention and control in health care for preparedness and response to outbreaks.” WHO. World Health Organization, n.d. Web. 13 Jan. 2017.

6. “Poverty Traps.” Research – Knowledge in Development Note: Poverty Traps. World Bank, n.d. Web. 13 Jan. 2017.

7. Whitley, E., D. Gunnell, D. Dorling, and G. D. Smith. “Ecological study of social fragmentation, poverty, and suicide.” Bmj 319.7216 (1999): 1034-037. Web.

8. United States of America. Continental Congress. The Declaration of Independence. By Thomas Jefferson. Washington, DC: National Archives and Records Administration, 1992. Print.

9. Munro, Dan. “U.S. Healthcare Ranked Dead Last Compared To 10 Other Countries.” Forbes. Forbes Magazine, 03 Feb. 2015. Web. 13 Jan. 2017.

Compulsion to Quarantine

I have a sign in my files which is pre-designed in case I should ever need to print it and place it on my door. It is one of many similar contingency plans I maintain just in case conditions should become such as to require immediate action on my part. Unlike most of the other contingencies which I maintain standing plans for, this one has actually happened to me before.

Here is a screenshot of the sign in question:

As you can see, this sign is designed to help enhance our house’s notably robust health precautions. Given the fact that I am not only immunocompromised, and thus more vulnerable to infections of all sort, but also physically disabled in such a way that makes treatment of acquired infections all the more difficult to treat, these relatively mundane precautions really are a matter of life and death.

In a perfect world, this would be a non-issue. In such a world, the appearance of any kind of infectious disease in a community, such as, to pick a relevant example, my high school, would result in an immediate and coordinated response to isolate and care for those affected, and to ensure that the disease is never allowed to spread. In such a world, the burden of ensuring that the sick receive adequate treatment to, if nothing else, avoid further spread of contagion, would be shared among all those potentially affected, which is to say, among all those that use community services and participate in community life.

Work would be provided for students who missed class, and absences due to illness would not be held against student advancement. Students would be encouraged to stay home and recover when sick, minimizing the overall impact of infection on the entire population. In such a world, it would be easy for me to attend school without fear of contracting illness and being hospitalized for a prolonged period, or worse, owing to the complications of my legally recognized disabilities.

Of course, this is not the world we live in. In our world at the present time, students rarely, if ever, stay home when contagious, or even when attending would be detrimental to their health. Having spent a considerable amount of time in my school nurses’ office, I can state categorically that it is vastly more likely for a given sick student to be sent home forcibly by the nursing staff than to be voluntarily taken home by parents, even when said students already have a clinically high fever and are obviously contagious. There are, of course, plenty of solid reasons why this is the case. Quite simply, the incentives created by the school administration are to blame.

For starters, ours is a terribly competitive school, where students are advised and compelled not only be parents and peers, but by staff advisors and counselors to take as many advanced placement and honors courses as can be logistically fit into a single schedule, without great regard for student interest or workload capability. This, in addition to a myriad of recommended extra-curricular activities and volunteer work. The nature of such courses is, obviously, to be quite intensive, and often unforgiving.

Furthermore, the fact that so many students, many of whom would probably be better served by courses that are “merely” honors or college-prep, are bumped up into higher echelon courses means that teachers are given the unenviable task of having to weed out those who oughtn’t be enrolled in the first place from those with genuine ability. This is accomplished primarily by a relentless onslaught of busywork designed to be taxing to even the best of students, and sufficiently crushing to those who lack the necessary conviction that they become compelled to drop those courses.

Naturally, this kind of curriculum is rigidly inflexible and unforgiving in such a way that missing one class becomes a major setback, and missing a week (the CDC’s recommended recovery time for seasonal influenza) is an effective death sentence. Teachers, who are as much burdened by the need to keep consistent and challenging curricula as the students are to keep up with it, are either too busy to meaningfully accommodate students who have been ill, or else are so jaded from years of having students cheat and evade work by any means in order to maintain a competitive edge, that they simply cannot effectively empathize.

Subsequently, it remains in the short term rational self interest of each individual student to continue coming to class for as long as they are physically capable, regardless of contagion risk, regardless of the long term harm that such exhaustion wreaks on an ill body. And after all, in the unlikely event that such a normally-healthy student is rendered so wretchedly close to death that they are forcibly removed from class, such a traumatic event will undoubtedly attract sympathy and support from the administration, only then providing the necessary accommodations.

This is, of course, only one part of a systematic incentive system which compels students to maintain their attendance regardless of health. There is still the larger problem of recorded absences. In our school, every absence after a certain number of days must be accompanied by a note from a licensed physician – even if standing orders exist from certified specialists to cover such eventualities. Failure to provide such documentation to the school’s liking results in automatic referral to Child Protective Services. This is still true, regardless of the age of the student. So, an eighteen year old who is completing high school will still require a parent to call in each day with a note from a licensed physician, under threat of referral to CPS.

As noted previously, even where absences are “excused”, actual class accommodations for said absences are never forthcoming. Thus, a culture of working oneself to death emerges, with students extolling the virtues of “working through a cold” unto one another. As with most discussions between adolescents, this naturally evolves into a sort of competitive posturing, with students all working to prove that they are the most devoted, most strong-willed, most likely to prevail against all other kinds of adversity.

And of course, if through this manner of working, one’s rivals should be exposed to some nasty pathogen that causes them sufficient pain to nudge the grading curve into a more favorable state, or else knock them out of the running for valedictorian, it might come to be seen that the proliferation of infection throughout the school is not entirely at odds with one’s own academic and political ambitions. In which case, what incentive is there for a rationally self-interested person to do anything but continue to attend regardless of contagion?

Thus it comes to pass that my school is, as my immunologist calls it, “the germ factory”, with seasonal outbreaks as reliable as the teachers’ quiz schedules. For most students who have normal physiologies and the robust immune systems to defend them, the occasional coronavirus or sinusitis is no great pain. At worst, it means a couple days carrying a box of tissues everywhere. But for me, these remain plan-derailing, life threatening catastrophes that likely end with me in the hospital.

Except as much as I wish myself to be above the stubborn self-damaging habits of my able-bodies comrades, I find myself in the same dilemma with regards to missing class. After all, why ought I to have to isolate myself, when I’m not even contagious? At a certain point, after a certain number of reported outbreaks, the strategic calculus changes enough to justify my own voluntary self-quarantine. This is especially true when the illness in question is a GI bug, which are, for a variety of reasons, my Achilles heel. But until that point, what can I do to balance my own safety against my education?

This is a question without a proper answer. In an ideal world, the burden would not be on me to sequester myself, but on others to ensure that they are not spreading contagious disease. But this is not the world we live in. We live in a world where the right thing to do, and the economically sensible thing to do are at odds. Ideally, this would be set right by a coordinated societal effort to realign the incentives with the morally and socially responsible choice. For the time being, I will keep my sign on the door.