equality – Renaissance Guy

Entitlements

I am decidedly upset because of what happened a few weeks ago as I was hassled in public at my local theater because of my disability. At a bag check, immediately after several people, including my able-bodied family were passed over with no more than a cursory inspection, I was stopped and briefly detained. I was told that I would not be allowed in with the contents of my bag. I explained that the items which she had indicated were medically necessary. The woman persisted, insisting that it was house policy, to which I replied that denying me access over a matter of medical necessity where it pertained to a legally recognized physical disability would be a blatant case of discrimination and a clear violation of the law. Or I tried to; I was flustered by her unusually pugnacious attitude, and the crowd that was gathering behind me.

After a few more moments of back and forth she switched to saying that while I might be allowed to bring in my backpack, I would certainly have to dump out the contents of my water bottle, which I also need for medical purposes. I was initially prepared to accept this on the assumption that it was a matter of security (this is, after all, what I do at TSA; I empty my water bottle before screening and refill it after at a public fountain) until she added the suggestion that I could purchase water at the concession stand; that this was a matter of commercial policy. That’s a horse of a different color. After all, I need my water. If I’m not able to refill it for free, then I’m being forced to pay because of my medical condition. And of course, when one is compelled to pay extra because one is disabled, that’s discrimination.

I tried explaining this. The lady seemed to relent on the water, but then demanded that I prove that I’m disabled and need these things. This is a trap, for two reasons. First, it’s essentially impossible for a person to positively prove that they need something to survive and be healthy to someone who is determined to be skeptical. To use an intentionally ludicrous example: Sure, you say you need oxygen, but have you tried going without it? Maybe you should try not breathing for a while and then get back to me. So asking someone to prove they’re disabled isn’t so much an honest question as a remarkably effective logical fallacy used to browbeat people.

The other reason this is a trap relates to HIPPA. Legally*, medical information is confidential and privileged, unless and until the patient reveals it voluntarily. Once the information is disclosed, however, it’s fair game. Kinda, sorta. It gets complicated real fast, and comes down to the comparatively squishy world of case law, reasonableness and intent. But it does mean that they can try and argue, based on whatever bits of medical trivia they happen to know, that they know your disease better than you, and they can (try to) say you don’t need whatever specific thing you’re asking for.

Usually, this is a moot point, because HIPPA is very clear that a person can’t be coerced to reveal their confidential medical information. The interpretation of coercion is broad enough that it could reasonably include requiring disclosure of medical issues to receive disability accommodations. The logic here is that if you are, in fact, disabled, that either option results in your rights being violated; either your right to equal opportunity or your right to privacy.

As a result, most institutions have a policy of not asking at all and only acting on what you give them. So, at most places, if you tell them you need a water bottle, and you haven’t given them any reason to disbelieve you (i.e. you haven’t mentioned a specific diagnosis that they think they’re familiar with), they won’t bother you. But apparently this lady didn’t get the memo.

I showed her the Medic Alert bracelet that I wear just to get her to let me go. Of course, I didn’t tell her that the bracelet, which is a third party nonprofit, wasn’t particularly more legitimate as proof than my backpack, which is a design given by another nonprofit to families with children diagnosed with one of my issues. The truth is that there is no universal, or even officially sanctioned, form of proof, since that too would either violate privacy by being tailored to specific diagnoses, or would have to be so broad as to give every person carrying an EpiPen personal aides, full access to handicap parking, free motorized wheelchairs, and every other accommodation in history.

I did politely tell her, because at this point I was growing rapidly annoyed with her attitude, that asking me to reveal my diagnosis and to try and prove it was a violation of my HIPPA rights. And since I’m the only person being required to disclose, is still discrimination. She shook her head indignantly, and tried to justify to me, claiming that she had encountered many other people who had claimed to need various things for medical reasons, but didn’t really need them.

I kept my mouth more or less shut, because I couldn’t at the time think of a polite way to respond; to suggest that it was quite possible that some of those people, though perhaps not all, did in fact need as they said, and that rather than catch the guilty, she had merely browbeaten the innocent into bending their medical protocol and risking their health in the process, as has happened to many I have met. I did not retort that her finding a way to reconcile her employer’s policy and federal law is distinctly not my problem, nor is it my problem to speak on behalf of everyone who might need disability accommodations to bring her up to speed.

If ever I seem to act entitled, it is because, as a matter of fact, the world does owe me. The world owes me not because I have suffered pain in the past, or because I have been discriminated against in a society that is supposed to avoid such things, and punish violators. Although it might be nice to receive some recognition for the struggles I have gone through, I am not so naive and petty as to think that the world is fair, and that I am entitled to compensation, even if I might deserve it. I am, however, entitled to my rights, and to my dignity. I believe that I am entitled to going out in public without being accosted and interrogated. I do not think this is too much to ask.

*Obligatory reminder: I am not a lawyer. And while I do my best to always be right, if you’re having actual legal issues, you should consult an actual lawyer. Which I am not.

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 Laptop Manifesto

The following is an open letter to my fellow students of our local public high school, which has just recently announced, without warning, that all students will henceforth be required to buy google chromebooks at their own expense.

I consider myself a good citizen. I obey the traffic laws when I walk into town. I vote on every issue. I turn in my assignments promptly. I raise my hand and wait to be called on. When my classmates come to me at the beginning of class with a sob story about how they lost their last pencil, and the teacher won’t loan them another for the big test, I am sympathetic to their plight. With education budgets as tight as they are, I am willing to share what I have.

Yet something about the rollout of our school’s new laptop policy does not sit well with me. That the school should announce mere weeks before school begins that henceforth all students shall be mandated to have a specific, high-end device strikes me as, at best, rude, and, at worst, an undue burden on students for a service that is legally supposed to be provided by the state at no cost.

Ours is, after all, a public school. Part of being a public school is being accessible to the public. That means all members of the public. Contrary to the apparent belief of the school board and high school administration, the entire student population does not consist solely of financially wealthy and economically stable families. Despite the fact that our government at both the local and state level is apparently content to routinely leave the burden of basic classroom necessities to students and individual teachers, it is still, legally, the responsibility of the school, not the student, to see that the student is equipped to learn.

Now, I am not opposed to technology. On the contrary, I think our school is long overdue for such a 1:1 program. Nor am I particularly opposed the ongoing effort to make more class materials digitally accessible. Nor even that the school should offer their own Chromebooks to students at the student’s expense. However, there is something profoundly wrong about the school making such costs mandatory.

Public school is supposed to be the default, free option for compulsory education. To enforce compulsory education as our state does, (to the point of calling child protective services on parents of students who miss what the administration considers to be too many days,) and then enforcing the cost of that education amounts to a kind of double taxation against families that attend public schools. Moreover, this double taxation has a disproportionate impact on those who need public schools the most.

This program as it stands is unfair, unjust, and as far as I can see, indefensible. I therefore call upon my fellow students to resist this unjust and arguably illegal decree, by refusing to comply. I call in particular upon those who are otherwise able to afford such luxuries as chromebooks to resist the pressure to bow to the system, and stand up for your fellow students.

Once Upon A Time

Once upon a time in a magical kingdom in Florida, a certain tourist hub instituted a policy for guests with disabilities. This policy, known as the Guest Assistance Card, allowed those who were familiar with its existence and could justify its use, powers unseen to mere mortals. With one of these mystical passes, a disabled guest and their party could avoid the long lines which plagued the kingdom. Although this could not heal the guests’ wounds, and could never make up for the challenges faced by these people in everyday life, it offered the promise of an escape. It kept true to the dream of a magical vacation unbound by the stresses and turmoils of everyday life.

Unfortunately, in a storybook example of why we can’t have nice things, there were evil-doers with poison in their hearts, who sought to abuse this system and corrupt it for everyone. Shady businessmen would rent their grandparents in wheelchairs to rich families craving the awesome power to cut lines. Eventually it became inevitable that the kingdom had to close this loophole. When it did so it shattered the hearts of many a handicapped child and their families.

Alright, I think you’re all caught up on the backstory here.

Though it disappoints me greatly that it came to this, with the level of abuse being turned up in tabloids and travel blogs, it was inevitable that Disney would have to end this program. As one who has used it myself, I will be the first to admit- it was overpowered. But from the impression I got from the guest services folks, that was part of the point. The point was never to get to the lowest common denominator necessary to adhere to federal anti-discrimination laws. The point was to enable these guests to enjoy their vacation. To enable magical moments which, for some of these kids, might never happen again.

There are many reasons why, for a long time, Walt Disney World was the default Make-A-Wish Foundation (and similar) destination, and this approach to disability is one of those reasons. The new program which replaced the GAC is workable- it basically works as a sort of on the go fastpass, giving you a return time equal to the listed standby wait minus ten minutes, after which you can go through the fastpass line at your leisure. But it is mundane compensation rather than a magical silver lining to living with disability. It is a crutch rather than a tricked out motorized wheelchair.

I don’t blame Disney for this change in policy. I know how some of the people were using the GAC, and they really had no choice. I do blame the ringleaders of these black market operations, and the people who paid them. As far as I am concerned, these people are guilty of perfidy, that is, the war crime of abusing the protections of the rules of war (such as feigning wounds) to gain an advantage. As for Disney, I am disappointed, but understanding.

I wish that this fairytale had a more appropriate ending. I wish that I could say that the evil doers faced poetic justice and were made to wait in an endless line while having to listen to the sounds of children crying and complaining about waiting. Unfortunately, this did not happen, and these few bad apples spoiled the bunch.

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

Statistically Significant

Having my own website (something I can only now scarcely say without adding exclamation points,) has unlocked a great deal of new tools to explore. Specifically, having an operational content platform has given me access to statistics on who is reading what, who is clicking on given buttons, and where people are coming here from. It is enthralling, and terribly addictive.

Here are some initial conclusions from the statistics page:

1) There is a weak positive correlation between the days I release new content and the days we get more views. This correlation is enhanced if we stretch the definition of “day” to include proceeding twenty-four hours, rather than the remainder of the calendar day on which the content was released. This suggests that there may, in fact, be people actually reading what I write here. How exciting!

2) Most visitors register as originating from the United States. However, the script which tracks where our referrals come from paints a far more diverse picture. This could be a bug in the monitoring software, or people accessing the site from overseas could be using proxies to hide their identities.

3) The viewership of this blog is becoming larger and more international as a function of time.

4) More referrals currently come from personal one-on-one sharing (Facebook, web forums, shared links) than stumble-upon searches.

5) Constantly interrupting one’s routine to check website statistics will quickly drive on stark raving mad, as well as suck time away from writing.

These are interesting insights, and worthy of understanding for future posts. Of course, the immediate follow-up question is: What do I do with this data? How do I leverage it into more views, more engagement, and more shares? How do I convert these insights into money of fame or prestige? The idea seems to be that if a thing is being shared, there has to be some value coming back for the sharer aside from simply contributing to public discourse.

While I will not deny that I would enjoy having money, fame, and prestige, as of now, these are not my primary goals in maintaining this blog. If I do decide, as has been suggested, to follow the route of the professional sharer, soliciting donations and selling merchandise, it would not be in pursuit of Gatsbyesque money and status, but merely so that writing and not starving may not be mutually exclusive.

It is still strange to me that I have a platform. That, in the strictest sense, my writing here is a competitor of Netflix, JK Rowling, and YouTube. I am a creator. I am a website owner. I have a tendency to think of those aforementioned entities as being on a plane unto themselves, untouchable by mere mortals (or muggles, as the case may be) such as myself. And in business terms, there is some truth to this. But in terms of defining the meaning of “artist”, “creator” and “writer” in the twenty-first century, I am already on the same side of the line as them.

I suppose the heart of the matter is that, setting aside that those entities actually have professional salaries, there is no intrinsic difference between either of us. They have platforms, and I have a platform. They have an audience with certain demographics, as do I. They receive value from the distribution of their work, and I do for mine (albeit in different forms and on different orders of magnitude).

Growing up, I had this notion that adulthood conferred with it some sort of intrinsic superiority borne of moral and cognitive righteousness, and conferred upon each and every human upon reaching adulthood. I believed that the wealthy and famous had this same distinction one step above everyone else, and that those in positions of legal authority had this same distinction above all. Most of the authority figures in my life encouraged this mindset, as it legitimized their directions and orders to me.

The hardest part of growing up for me has been realizing that this mindset simply isn’t true; that adulthood is not a summary promotion by divine right, and that now that I too am a nominal adult, that no one else can truly claim to have an inherently better understanding of the world. Different minds of differing intellectual bents can come to differing conclusions, but people in power are not inherently right merely because they are in power.

I am not a better or worse human being merely because I happen to have the passwords and payment details to this domain, any more than Elon Musk is an inherently better human for having founded Tesla and Space-X. Yes, the two of us had resources, skills, and motivation to begin both of our projects, but this is as much a coincidental confluence of circumstances as a reflection on any actual prowess. Nor are we better people because we have our respective audiences.

In this day an age, there is much talk of division of people into categories. There are the creators and the consumers. The insiders and the outsiders. The elite and the commoners. The “world of success” as we have been taught to think about it, is a self-contained, closed-loop, open only to those who are worthy, and those of us who aren’t destined to be a part of it must inevitably yield to those who are. Except this plainly isn’t true. I’m not special because I have a blog, or even because I have an audience large enough to draw demographic information. There is nothing inherent that separates me from the average man, and nothing that separates both of us from those at the very top. To claim otherwise is not only dangerous to the idea of a democratic, free-market society, but is frankly a very childish way to look at the world.

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.