[culture] Further notes on the social invisibility of illness and disability
Yesterday I flew across the country wearing a face mask. This is something I’ve done several times of late. The resulting interactions are fascinating.
I’ve written before about social invisibility and mobility. Being on a scooter makes me socially invisible in a way that as a white man I’d never really experienced before. It was something between amusing and annoying, though mostly annoying.
Carrying a cane creates a more sympathetic response. Unlike the scooter, where people seem to assume I have a serious cognitive deficit, the cane (mostly) elicits courtesy at doorways and in lines and direct interactions from people.
I think the difference between the two is height. Even with the cane, my face is in an adult male position with respect to others. On a scooter, I am below the line of sight of everyone except children and people of very small stature.
But the mask… The mask creeps people out. It will come as a surprise to no one who knows me that I make a lot of eye contact with other people, especially women. When I’m wearing the mask, I encounter avoidance behaviors on a massive scale, that I rarely if ever encounter without the mask. It’s as if I’ve become creepy stalker guy. Men avoid me, but in somewhat different ways, as if I am embarrassing to them.
In other words, a lot like being back in high school.
I assume there’s a fear, spoken or unspoken, that as I am wearing a mask, there’s a chance of catching something horrible from me. It’s a marker of illness, a banner of disease. It generates not so much social invisibility as borderline pariah status. The reality in my case is that I’m trying not to catch something from the people around me, but they have no way to know that.
So, in simple terms, this is my experience of how I’ve been perceived and treated:
Scooter: Invisible and cognitively compromised
Cane: Visible and even treated with respect
Face Mask: I am the Walking Dead and I will eat your brains
Photo © 2014, Joseph E. Lake, Jr.
This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Posted: 7:22 am Wed March 05 2014 | Comments(11) |
[culture] A modest proposal for national identity cards
I’ve figured out the point of the profoundly discriminatory legislation advanced by religious conservatives in Kansas, Arizona and elsewhere. It’s part of a conservative plan for national identity cards.
Think about it. How do you know someone’s gay, or bi, or trans, or queer, or whatever? I mean, some straight guys wear WHAM! t-shirts, and plenty of gay guys ride Harleys and pack heat. Lots of lesbians pass. It’s not like there’s any convenient way to assess whether the gay menace has entered your place of business, such as skin color or something. So clearly, we’re all going to have to carry cards identifying our sexual orientation, or the whole scheme falls apart.
The reverse is true as well. How does an LGBTQ customer know whether they’re being discriminated against illegally in violation of the Constitution’s equal protection clause, or just being legitimately persecuted as part of a sincerely-held religious conviction? So the business owners of Arizona and Kansas and so forth will have to carry cards certifying their religious affiliation, with endorsements as to which groups of people are subject to exclusion according to the strictures of their own particular faith. Otherwise a Jewish restaurant owner declining to serve bacon cheeseburgers out of their kosher kitchen might be mistakenly called out, for example.
Rather than having parallel sexual and religious identification schemes, the obvious answer is to have a single consolidated DiscriminaCard™. Perhaps colored stars could be sewn on everyone’s clothing to further facilitate the use of the cards. This would provide a simple, unmistakable way of meeting the religious conservative ideals expressed in these laws.
This is America, land of the free, where all men are created equal, except for those of whom your pastor disapproves. How else is a good conservative to know how best to discriminate without such helpful hints? Hate is so hard to manage when you can’t tell people apart at a glance, after all.
DiscriminaCard™: your Republican party’s best idea for a better America.
Posted: 8:46 am Thu February 27 2014 | Comments(7) |
[politics|culture] Some more coherent thoughts on Kansas House Bill 2453
I am still wrestling with this whole Kansas anti-gay thing, their state House Bill 2453. Andrew Sullivan encapsulates a lot of what I’m thinking quite well in his comments here. But, still.
It’s like this. If a bunch of Christ-hating, liberal, atheist, Socialist, Pacific Northwest hipsters had sat down to come up with the worst example of the raging, paranoid anti-gay, Christian stereotype that drives liberals and progressives crazy, they couldn’t have done any better than good, honest religious conservatives in Kansas did all on their own in complete seriousness. It’s like one of those life-imitates-The Onion stories. That’s what I was trying to get at with my Poe’s Law comment yesterday. Heartland conservatives have managed to transcend parody, becoming cartoonish imitations of the worst version of their own public image.
This validates every liberal-progressive image of conservative Christians in America as oppressors, as persecutors, as unpatriotic and unConstitutional in their furious fixation on denying legal and civil rights to their fellow citizens. This is everything my conservative friends often take me to task for claiming to see in the American Right, everything my conservative friends label as paranoid liberal fantasies.
This is the real deal. Religious conservatives in their own words.
Nowhere in this country would you see a similar bill legalizing a wholesale denial rights to Christians. Nowhere.
Maybe I’ve missed it, but I haven’t seen any conservatives in my social media stream, or in the blogosphere, or in the media, or in politics, speaking out against the Kansas bill. A lot of silence, no one standing up for American values or the integrity of the Constitution. No conservative Christian standing up for basic Biblical principles, such as Galatians 5:14, For all the law is fulfilled in one word, even in this; Thou shalt love thy neighbour as thyself. Or Luke 6:31, in Christ’s own words, And as ye would that men should do to you, do ye also to them likewise.
I have a very simple question for my religious conservative friends. Is this how you want to be known, by your own worst stereotypes, as plainly expressed in the words and deeds of your fellow religious conservatives?
Note: Yes, I’m aware that the president of the Kansas senate walked this back. But if you read her actual statement, she only walked it back a little bit on procedural and legal grounds. She neither denied the bill’s basic intentions nor its objectives, merely raised an issue about accessibility of government services. She’s asked for the bill to be redrafted and sent back, still referring to it as an honest effort to protect religious freedom. This hardly represents redemption, or even an outbreak of common sense. It’s a recognition of the legal quagmire the bill opens, little more.
Posted: 7:55 am Mon February 17 2014 | Comments(3) |
[personal|culture] Valentine’s Day
I was one of those kids in grade school and junior high for whom Valentine’s Day was a torture. You know, getting the “pity Valentine”, or one from the teacher but none from the students. Almost always the new kid who’d just come in to the class, socially and physically awkward, mouthy, too smart and not wise enough to hide it. So this is a holiday that’s never pleased me much, because it always seemed to be as much about exclusion as inclusion.
That being said, as an adult, I’m glad there’s a celebration of romance for those people who have romance in their lives. Hooray for love, right?
But romantic love isn’t binary, and romantic love isn’t exclusive, and romantic love isn’t as simple or enduring or fulfilling as almost all our cultural reinforcement would have us believe. Even at its best, romantic love is complicated stuff, and it is hard work. All the more so if you don’t fit the mold.
In truth, who does fit the mold?
I know the desperation of fading hope, and I know the fulfillment of a well cared-for heart. Especially these days, thanks to Lisa Costello, who stands by me in the face of overwhelming adversity.
But really? Love yourself today. Remind yourself that in taking care of you, first, you make yourself available to any partners, current or prospective, to your kids and pets if you have them in your life, to the world as a whole. We all ought to send ourselves hearts and flowers first. Then we’ll be ready to love one another.
From the kid in the corner being giggled at behind the hands of the rest of the class, you are not alone. And it can be better.
Happy Valentine’s Day, whatever that means to you.
Posted: 7:05 am Fri February 14 2014 | Comments(3) |
[cancer|culture] Employment and me and the American obsession with work
Interesting article here about American’s relationship to work, specifically in light of some of the recent Republican bitching about Obamacare and jobs. As if introducing broader economic choices and more personal freedom by eliminating healthcare-driven job lock and marriage lock were somehow a bad thing.
The article says:
You heard echoes of America’s Puritan roots in Republicans’ latest argument against Obamacare: Work is a irreducible part of who we are and anything that shifts incentives away from work is a step toward indolence and sloth. We might be a more secular nation in the 21st century, but we still generally establish our self-identity through our occupation, experts say. The Protestant work ethic prevails.
Speaking as someone who is no longer working, but living off SSDI and private disability insurance, um, yeah. This issue bothers me a lot. My basic cultural wiring is just as embedded in the poisonous cesspool of Calvinism as the rest of America. I was raised with a Southern-tinged Protestant tilt. I know in my bones that worldly success means God’s favor, that illness and poverty mean that one has failed morally. This is how our culture behaves, to our everlasting shame.
So now, being on disability as I am, I’m no longer working in the usual sense of the term. Being a cancer patient is certainly a full time job, but it doesn’t embrace what conservatives call “the dignity of work”. (Which, by the way, is something I think they do get right — there is a dignity in purposeful work. Where I diverge from my conservative friends is in the definitions and implications inherent in that phrase. The core idea I don’t have a problem with.) I can’t work, even if I wanted to. Yesterday’s lunchtime trip into DC underscored how shallow my physical and mental reserves really are. That’s why I’m on disability.
We as a society harshly judge people who don’t work (excepting of course the idle rich). Who are perceived to lack ambition or ability. Where does that leave me? I worked hard all my life, did pretty well financially and professionally, and now drowning in the seas of cancer at the twilight of my days, am sidelined.
Sometimes that bothers me intensely. I miss both the job I had — I enjoyed my profession and my workplace and my coworkers — and I miss being that kind of busy. I miss writing for part of my living. I miss being focused and economically productive. I am not poor, even now, but I am certainly ill. About as ill as one can be without actually being dead.
It’s not a sense of failure. More like something at the intersection of shame, regret and frustration. I wish I could retool my mental landscape and see this time of being on disability benefits as my version of honorable retirement, or as my compensation for the job of being a cancer patient and standing witness to the disease for myself and others. Maybe I’ll succeed in that yet. But so far there’s too much of that American Calvinism in me to just let go.
Posted: 6:32 am Tue February 11 2014 | Comments(6) |
[culture] Pointing back to my 1% post
I don’t normally signal boost myself, except for occasional event promotion, but I made a post on Saturday that my larger weekday audience might have missed, and I think it’s important.
In a post entitled [culture] The 1% and hard work I talked about the basis on which people are compensated in American economy and society. I’m neither attacking nor defending the current system, just pointing out that to an important degree, I believe we’re having this discussion on the wrong foundational terms.
As it happens, even though I am quite privileged in the social justice sense of that term, my sympathies lie strongly with the 99%, the 47%, and the people who work harder than ever to make ends meet. But wherever one’s sympathies lie, however one views the “makers and takers” dialectic and all the analogous debates, I think it’s import to be talking about the right things.
So if you didn’t see it over the weekend, take a couple of minutes and go read. I’ll be interested in what you think.
P.S: If you have a comment, best to comment there to keep the thread going. I’m taking the very unusual-for-me step of closing comments here in order to encourage that.
Posted: 5:55 am Mon February 10 2014 | Comments(0) |
[culture] The 1% and hard work
Last night on social media, I made this observation:
Someone who believes the 1% are wealthier because they work harder has never met a migrant farm worker, a janitor or a single mother.
That provoked quite a bit of commentary, sharing and reposting on both Twitter and Facebook.
I wanted to expand on that a little bit this morning. If you’re not sure what I’m referring to in the first place, see the recent discussions in the online and print media world about the public defensiveness of the 1%. This piece from Talking Points Memo is a good place to start, as it links to a number of other pieces.
Basically, there’s a self-valorizing myth among the wealthy in America that they got to their current situation due to their exceptional hard work. (I’m ignoring inherited wealth for the purposes of this discussion.) That same argument is used to justify high salaries in the legal profession and elsewhere. I am not saying that the wealthy don’t work hard, but it’s a ridiculous claim that hard work is the causal difference between wealth and lack of wealth.
That was my basic point. Poor people in general work much, much harder than rich people, for far less reward. It’s something many people of wealth are either unaware of or have long since forgotten.
I’m not throwing stones at the Bastille here. Prior to my own going on disability, my annual income put me in the top quartile of American wage earners. A proud member of the 25%, I suppose. I have absolutely benefited from the privileges of my birth and social class, and from being a white collar knowledge worker. And I have worked pretty damned hard over the years.
But I’ve never, ever had a job where I worked as hard as the custodial staff who cleaned the buildings I worked in at night. Or where I worked as hard as the people who picked the tomatoes that I could find in my salad at lunch every day.
Though I have been an exceptionally hard worker, I never confused my economic success with exceptionally hard work.
It’s not about working smarter, either, which is one of the fallback positions in this argument. Yes, knowledge workers can be highly paid. Ask any successful attorney or senior IT person. But teachers work smart every day, and so do emergency responders, while neither of those professions is highly paid. Likewise anybody in the lower end of the advertising world. And those are just lines of work that leap to mind in the first moment’s reflection.
Though I have been an exceptionally smart worker, I never confused my economic success with exceptionally smart work.
As my mother, a/k/a tillyjane, explained to me once when I was a young man, in our society we don’t pay people according to how hard they work, or how important their jobs are. If we did, teachers would be at the top of the pay scale. In our society, we pay people according to how well they can make the money move.
The examples easiest to perceive are top-tier athletes and actors. Because a big name star can increase the take at the gate or the box office, they’re paid more. Essentially, it’s a form of commission. Likewise people who work in high end sales, or Wall Street level finance. They’re commissioned, either directly or indirectly, because of the financial transaction volume they generate. Likewise C-level officers of major corporations, who are compensated as highly as they are because they are supposed to be able to influence corporate revenue.
The 1% are where they are not because they work harder, or because they work smarter, but because they are able to influence the flow of money.
Note that I am neither defending nor attacking the system. I’m merely pointing out that the current argument being advanced by some among the 1% is specious and self-serving, designed to appeal to the American archetype of the self-made success and the idea of class mobility.
The reality is much, much tougher. Me, I’ve never been poor. Sure, I’ve been student-poor. I’ve been lower middle class-poor. I’ve lived paycheck to paycheck. I’ve been financially distressed by a real estate bankruptcy (in the 1990s) and by extraordinary medical expenses (these past six years). But I’ve never in my life had to choose between feeding my kids and paying the heating bill. I’ve never broken my back working two and three jobs while trying to figure out how to pay $1,000 worth of bills with $600 worth of income, and no way out.
Those people, who are millions of Americans, work much, much harder than Sam Zell or Tom Perkins can ever imagine. Those people, whose lifetime earnings will be less that the monthly cash flow of the household of someone in the 1%, work much, much harder than almost any of us who are not also that poor can admit to.
Because there is your injustice. Not the paranoia of the extremely wealthy who realize they are at the top of a dangerously unbalanced pyramid. But the work of millions that keep all our floors clean and all our salad plates stocked.
Me, I’m close enough to being one of those wealthy that I’m probably standing on the ethically challenged side of this divide. But even I can see the strains in the system.
Should it be this way? I’m honestly not sure. That’s the way our system works. Rightly or wrongly, that’s the way our system is designed to work. I’m not advocating revolution here. But I am advocating honesty, rather than self-valorizing paranoia and class-based whining about the class-based oppression allegedly suffered by the privileged.
Because in honesty, we can define our problems. And in defining our problems, we can solve them. And frankly, Perkins and Zell et alia are right about one thing. Hard work should be rewarded. So let’s recognize who works hardest in our society, and let’s have an honest discussion about how to reward them.
Posted: 7:03 am Sat February 08 2014 | Comments(10) |
[cancer|culture] The hour and manner of one’s passing
I don’t have a lot to add to what’s already being said about the death of Philip Seymour Hoffman. He was a successful actor and director who was still underrated, in my uninformed understanding of Hollywood and Broadway. He took brave and frightening and silly roles, sometimes all at once, and inhabited the screen with a certain everyman awkwardness that was both endearing and familiar.
But death, now death has become a close friend to me this last year. Riding on my shoulder, always at my side, hearing with my ears, speaking with my tongue, thinking with my thoughts. Even as I write this I am lying in a hotel room bed on a heated mattress pad with my right side wrapped in a heating pad, every breath a pain, every movement an ache, each of those tiny, sharp, endless crystal moments a reminder that barring a medical breakthrough of almost literally miraculous proportions, I will be gone in a matter of months and weeks.
As it happens of course, we’re working on that medical breakthrough. That’s why the bed I am lying in happens to be in Ocean City, Maryland, 2,950 miles from my home in Portland, OR. My crowd-funded Whole Genome Sequencing drives a realtime experiment in mutation-based selection of TIL cells happening on a lab bench not far west of here at the National Institutes of Health in Bethesda, Maryland. I am choosing to live, in pain both physical and psychic, for so long as I can. I am perhaps too stupid and stubborn to die any sooner than I might.
Yet, I say this as if I have any direct control over the ways and means of my cancer.
As a matter of philosophy, I don’t oppose what we somewhat ironically call “recreational drug use”. As a matter of philosophy, I support a right to die for those who feel the need to do so. That would almost make me a Libertarian, at least back in the days before that group became Tea Party lunatics and lost all moral and intellectual credibility.
But I strongly oppose harm to others. In any form. Medicating yourself to death, as Hoffman appears to have done (whether accidentally or with a purpose) slays a portion of the hearts of everyone who loves you.
I know this, as I know that my own increasingly overwhelming mortality slays a portion of the hearts of those who love me.
As I’ve said in several other contexts recently, when death is being forced upon you, as it is with me, then life becomes all the more precious. There’s always a tomorrow, no matter how bad today looks.
That’s not me speaking in cliche. That’s me speaking as someone who spent my teens and twenties so gripped in chronic clinical depression that I found it necessary to try to take my own life, and wound up in considerable treatment because of that. I was lucky enough to have a chance to walk it back, and go on to have a life and loves and a child and writing career.
My chances to walk it back are almost gone beyond recall. The hour and manner of my passing is being dictated by genetic inevitability and the toxic tumor-children of my body.
Philip Seymour Hoffman will never have a chance to walk it back now. The hour and manner of his passing has been set and sealed, seemingly by his own hand.
And that makes me sad. For him. For those who loved him in his everyday life. For those among us who admired him from a distance.
Because one of the things that makes me saddest for myself is that there’s always a tomorrow, but soon enough I will never again see the sun rise. Neither will Mr. Hoffman.
The hour and manner of one’s passing is always the last today.
Posted: 6:22 am Mon February 03 2014 | Comments(7) |
[religion|culture] The self-valorizing Christian myth of persecution
Yesterday on my Facebook wall there was a fair amount of commenting conceding my blog post entitled “What I Believe About What You Believe”.
At one point, Brad Torgersen said:
[F]or a growing body of zealous atheists, their interpretation of “freedom from religion” includes quashing all public manifestation of faith, be it aural, or visual.
As a committed First Amendment supporter, I’m not concerned about public manifestations of faith. I’m concerned about publicly-sponsored manifestations of faith. There’s a vast and unsubtle difference there which many people of faith pretend not to understand because it’s much easier to be outraged if you don’t make the distinction.
Without stopping to think about it very hard, I came up with a quick list of public manifestations of Christian faith which are not publicly-sponsored. These permeate our culture every day, and for there is no serious attempt to undermine any of these public manifestations of Christian faith via legislation or executive action or even public pressure.
- Christian schools and colleges
- Christian broadcasts on radio, television, and cable
- Christian movies
- Christian Internet sites
- Christian publishers
- Christian bookstores
- Christian signage in outdoor media such as billboards and bus signs (which in many areas of the country are forbidden to atheists)
- Christian church buildings (including their placement and architecture)
- Christian church signs (which are an entire cultural trope unto themselves)
- Sunday, the Christian holy day, being the default day of rest for most workers
- Christmas as a nearly universally observed public holiday (no other religion in America has anything remotely approaching this privilege)
- Christmas carols being almost inescapable in public gathering places between Halloween and New Year
- Easter, or at least Good Friday, as a widely observed public holiday (no other religion in America has anything remotely approaching this privilege)
- Christian phrases such as “God bless America” being nearly universal in our public discourse
- “Under God” in the Pledge of Allegiance
- “In God We Trust” on the money
- The Bible being used to swear witnesses into legal proceedings
- The Bible being used to swear politicians into office
- Roadside crosses as a nationwide symbol memorializing traffic deaths
- Crosses as a near universal symbol in cemeteries other than those reserved exclusively for non-Christian faiths
- Bumper stickers and those little fish decals on automobiles everywhere in America
- Christian apparel worn every day in every city and town in America
- Christian jewelry worn every day in every city and town in America
Some Christians like to cite the so-called “War on Christmas” but that’s a marketing meme invented by FOX News, the same organization which has successfully sued for its First Amendment right to lie, and whose viewers are significantly more misinformed than consumers of any other major news source in America. Professional liars, in other words, and not exactly a trustworthy source. Besides which, the last time I looked, Christmas was doing just fine. There weren’t any FEMA troops blocking church doors this past December 25th, and practically the whole world wished this atheist a Merry Christmas.
What offends Christians insofar as I can tell is the slowly increasing restrictions on publicly-sponsored displays of faith. Not public displays. Publicly-sponsored displays. The Nativity scene on the lawn of City Hall has been banned in many places. The Nativity scene on the lawn of the church, or anyone’s private property, most certainly has not. School prayer has been banned in many places. Private prayer, even in schools has not. The explicit legal privileging and protection of Christian practice is not quite as ironclad as it used to be, but the social privileging carries on as strong as ever in every aspect of life.
Brad went on to say:
And yes, I can read Jay’s retort before he even writes it: American Christians are just upset because their domination of the public square is being questioned, boo hoo. Dominance in number is one thing. Dominance in law?
Got it one, Brad. The Christian perception of persecution in America is nothing more than a slight erosion from the unthinking privilege of absolute cultural supremacy to merely overwhelming cultural dominance. Viewed from outside the framework of Christian faith, the persecution claim betrays a laughable lack of awareness combined with an apparent need for self-valorizing outrage. That entire list of public displays of faith, and the hundreds or thousands more items which could be added to it, is in no danger whatsoever from legal action, executive fiat or public pressure.
(And yes, I’m sure angry Christians can come up with isolated counterexamples for almost anything I’ve mentioned above. Be careful if you want to play that game. For every outrageous report you might come up with, practically every gay, lesbian, Jew, atheist, liberal-progressive, pro-choice activist and secular humanist in the country can bury you in shame with their own Christian-inspired pain stories.)
While public displays of faith are not endangered, what is endangered is the Christian freedom to require other people to conform to Christian mores, which is what almost the entire Culture War boils down to. What is endangered is the Christian freedom to force children of Jews, Muslims, Hindus, Sikhs, atheists and many others to bow their heads in Christian prayer or watch as Christianity is promoted by the state at the expense of all other faiths. What is endangered is the Christian freedom to promote arrant cruelty and profound bigotry agains gays, lesbians, and the transgendered in the name of religious values. Just to name a few examples.
You know what? If that counts as persecution, then I’m a proud persecuter of Christians. But whatever my personal feelings on the matter, I don’t object to Christian academies or bus signs or Nativity displays on church lawns or Christmas carols or all the other myriad Christian symbols and practices that permeate our culture. The same First Amendment that protects me from your faith protects your faith from me. Public displays of Christian faith are not just alive and well, they are pervasive in America. With this atheist’s blessing, because, hey, it’s your freedom of religion.
And all of this hardly constitutes Brad’s “quashing all public manifestation of faith, be it aural, or visual.” It barely begins to level the playing field for people of other faiths or no faith at all. And claims of persecution are quite literally and sadly laughable.
When Christians in America claim persecution, at the kindest interpretation they appear uninformed and unselfaware to anyone who isn’t sharing their faith framework. Come to me when you are pulled over by the police for your Christian bumper sticker. Come to me when Christmas is no longer celebrated as a holiday. Come to me when millions of your fellow citizens vote to deny you civil and legal rights because you are Christian. Come to me when your churches are denied zoning and building permits because of their potential for evil. Come to me when your children are forced to bow in Islamic or Jewish or Sikh prayer in school. Come to me when carrying a Bible is probable cause for you to be stopped and arrested. Come to me when you are forbidden to travel because of your religious garments. Come to me when Christians are beaten and tied up with barbed wire and left to die in the cold because of their religion. Come to me when the FBI investigates you and your church looking for terrorists.
Then we’ll talk about persecution.
Posted: 7:56 am Fri January 17 2014 | Comments(26) |
[cancer|culture] Talking back to the Kellers
On Wednesday, January 8th, Emma Keller, who writes for The Guardian, published a piece called Forget funeral selfies. What are the ethics of tweeting a terminal illness?. (Note, the piece has been taken down, The Guardian simply stating, This post has been removed pending investigation. Apparently Ms. Keller may have breached confidentiality.)
On Sunday, January 12th, Ms. Keller’s husband Bill Keller, former executive editor of the New York Times, wrote a companion piece entitled Heroic Measures.
Both pieces focus on a late stage breast cancer patient named Lisa Bonchek Adams, who communicates via Twitter about her experiences with increasingly aggressive and invasive breast cancer.
A lot of digital ink has already been spilled on this. I linked to one piece a day or two ago, reading both Keller posts at that time. (This was before Ms. Keller’s was taken down by The Guardian.)
I don’t see any particular ill intent in either post. I don’t see deliberately cruelty. I do see some honest attempts at grappling with extremely difficult questions about healthcare costs and decision making and the morality of personal care decisions and the weight of dying.
I also see a profound lack of empathy and self-awareness. I also see a wistful nostalgia for a simpler time when death was a private, even shameful, matter about which no one but the principal and those closest to them had to be embarrassed or made to feel uncomfortable. I see two people who apparently enjoy the wholly transparent privilege of good health being judgmental about those of us in this age of social media on the dark and final journey.
On mourra seul, Blaise Pascal wrote. We die alone. The context for that statement in the posthumous 1669 publication of Pensées was very different than today, but it still rings strong and true for me. Though cancer is, as I have said many times, a social disease that strikes at the hearts and minds of everyone around the patient, in the end, each of us suffers the ultimate extinction as a solitary experience.
But the road to that death… That road is a road each of us can choose to share or not to the limits of our own needs, our own privacy, our audience, our hearts. That two wealthy, healthy people with global soapboxes stand back and pass judgments about the lack of heroism inherent in making a public spectacle of one’s death is both foolish and insulting. And like almost everything else that happens in our cancer journeys, it is inhumane.
There is no special heroism in suffering in silence, as Mr. Keller tries to tell us. There is also no shame in suffering in silence, as Mr. Keller seems to believe people like Lisa Adams and me are saying. Everyone’s journey is their own. Everyone’s degree of openness is their own. In a context like this, concepts of “TMI” and “oversharing” are entirely in the eye of the beholder.
You don’t have to read any of this.
Bill, Emma. If you don’t want to see the spectacle, don’t look. It’s not like Lisa Adams or me or anyone else in our position has, oh, say, to pick an example totally at random, a column in one of the world’s leading daily newspapers. We each tell our own stories for our own reasons. People heed those stories for their own reasons. Our privacy boundaries are where we set them, your reading boundaries are where you set yours.
Surely those of you with powerful voices that project across the world stage have better things to do with your time and resources than assuaging your discomfort at the hard facts of life and death by moralizing about other people’s pain?
Posted: 8:11 am Tue January 14 2014 | Comments(14) |
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