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[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?

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[culture|religion] The wonders of religious privilege

I broke one of my own rules and got involved in a lengthy back-and-forth on Facebook with some folks over religious questions. (No link, because I don’t want anyone to feel called out or embarrassed — they are welcome to come link themselves in comments if they so choose.)

In all fairness to everyone involved, including the friend whose Facebook page this all unfolded on, for the most part it’s been fairly civil and interesting, rather than degenerating into a swamp of name calling or accusation. However, I was very struck by something one commenter said to me in challenging my assertion that freedom of religion necessarily means freedom from religion.

To me, this statement is so self-evident as to be axiomatic. Without freedom from other people’s expression of their religion, how is any citizen going to able to find and express their own faith? Protecting everyone from anyone’s individual form of religious expression is precisely how everyone’s freedom of religion is protected.

I don’t mean you can’t have a Nativity scene on your lawn, or a parade on your favorite saint’s day, or whatever. Freedom from religion means freedom from state-sponsored or state-sanctioned religious expression. Which does mean you cannot have a Nativity scene at City Hall, or teacher-led prayer in school. Because those things lessen the status of people who are not Christian, and force them to conform to something they do not believe.

For any Christian who is now thinking I’m a full-of-shit atheist, consider this: How would you feel about teacher-led Islamic prayer in schools? Or all school cafeterias keeping kosher and halal? Or a Menorah on the lawn at your City Hall? If you’re not fully comfortable with that, then you now completely understand why other folks are not comfortable with officially-sponsored Christian piety.

So in the flow of this discussion, another commenter pointed to the Mt. Soledad Cross in California, saying:

“The man who filed the suit did so because he felt “oppressed” whenever he saw that cross. That’s it.”

It’s very clear from the wording that to this commenter, it’s inconceivable that any reasonable person could be offended by a memorial cross. They view the cross as a benign symbol, value-neutral at worst in the larger scheme of things, and cannot understand why anyone else might feel differently. That someone else does feel differently is threatening and enraging.

That is religious privilege in a nutshell, right there.

For the past two thousand years, the cross has been a symbol of bigotry, oppression and pogrom to Jews. Why shouldn’t the cross be offensive to some of their modern descendants?

In both the Middle Ages and the modern era, the cross has been a symbol of wholesale slaughter and the destruction of entire nations to many in the Muslim world. Why shouldn’t the cross be offensive to some Muslims today?

For nearly the first century of the history of this nation, some Christians stood firmly on the Bible to justify the chattel slavery of millions. Why shouldn’t the cross be offensive to some of those slaves’ descendants?

For most of the history of this nation, some Christians have treated unwed mothers and single mothers with a profound cruelty, punishing them and their bastard children in ways large and small. Why shouldn’t the cross be offensive to some of those women and their descendants?

In contemporary America, as well as throughout history, some Christians have treated their LGBTQ relatives and neighbors with unspeakable cruelty, persecuting them, severing family ties, denying deathbed visitation and inheritance rights. Why shouldn’t the cross be offensive to some LGBTQ people?

In other words, angrily assuming only a trouble-making nut could object to the erection of a cross on public land, with all the official endorsement that implies of the cross and everything it symbolizes, is a profound and unthinking act of religious privilege. It’s the same religious privilege that leads contemporary Christians to make self-valorizing claims of persecution because their absolute cultural supremacy has eroded to merely overwhelming cultural dominance.

If you stand outside that frame, this is both a sad and frightening attitude. Sad, because of the profound lack of self-awareness it betrays. Frightening, because the power of religious conservatives to harm everyone in the nation in their panic at their sense of decline is demonstrated over and over again every day in the media and at every election cycle.

The wonders of religious privilege, indeed. This is the anger of the mighty at being called in the smallest measure to account for their words and deeds.

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[culture|politics] Free speech and whatnot

Let me be clear. I don’t care about Phil Robertson and Duck Dynasty, or A&E. I think I saw about six minutes of that show once in a hotel lobby, so unlike most cable television products, I have a very slight clue.

Still don’t care.

It’s a free country. We have this little thing called freedom of speech. Phil Robertson surely has the right to be a wrong-headed, willfully ignorant bigot. If that weren’t true, FOX News would have six minutes of weather programming a day and otherwise be nothing but test patterns.

Thanks to corporate personhood, a doctrine generally much beloved of conservatives, A&E surely has the right to manage its image by placing behavioral requirements on its employees and contractors. If that weren’t true, FOX News wouldn’t even have six minutes of weather programming a day.

Neither Robertson nor A&E has a Constitutional guarantee of freedom of consequence from their acts. This is a point conservatives have pretended much ignorance on the past few years. A&E is free to suspend Robertson. Those who proudly support Robertson’s disgraceful racism are free to call for a boycott of A&E.

Number of shits given by me either way: zero.

However, to all those conservatives now up in arms about this alleged travesty of free speech and suppression of legitimate opinion, I have two words:

Dixie Chicks.

Y’all do not have a leg to stand on, my friends. Go find someone else to hate. It’s what conservative America does best, after all.

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[personal|culture] Me and customer service just lately

Like most white men of a certain height, class and educational standing, I wander through life in a cloud of largely invisible-to-me privilege. This privilege often expresses itself as good customer service. Sometimes it’s earned (for some value of “earned”) such as my frequent flyer status, sometimes it’s situational. I do make a serious effort to notice this sort of thing, so that, for example, if I walk up to a busy deli counter and am called next, I defer to the people who were waiting before me.

Lately the customer service levels which affect my life have been noticeably compromised in various ways. Yesterday I was talking to Lisa Costello about this. As I said to her, am I more needy due to my recent disabilities? Am I more demanding due to being shorter-tempered and fussier? Or am I really just bumping into increasingly weird problems at a higher rate than usual?

Her response was to comment that I’d become a strange attractor for customer service problems. Which doesn’t really answer my question, but was kind of funny. It was helpful to me in confirming that I’m not just experiencing observer bias or enjoying a version of the recency illusion.

I actually think it’s a combination of all three of my theories. My recent travel difficulties with wheelchair service wouldn’t have occurred in the first place if I didn’t need wheelchair service, for example — my recent issues with American Airlines. I am crankier than I used to be, what with the whole dying of cancer thing going on — yesterday’s noisy restaurant problem. And some of the problems I’ve encountered have been categorically weird, outside the usual run of issues — the whole CarMax power-of-attorney thing.

Being white, male and well-spoken didn’t really help me with any of these issues, though it certainly helped me resolve them post facto. Being disabled, well…

One more set of things to burn spoons on and have to deal with.

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[culture|politics] Solutions designed by people who never have to use them

Lisa Costello and I were talking (again) recently about the concept of solutions designed by people who never have to use them. My favorite example for elucidating this concept is what happened to me when my former Day Jobbe employer was acquired by a much larger entity about five or six years ago.

I was being oriented on the new expense reporting system. This was a Web-based Oracle application, and had all the usual features of any expense reporting system. But it also required a great deal of input for accountability. Division code, project code, etc. This without even respect to whether or not an expense was client billable. There were weird lacunae in the feature set that didn’t correspond to how anyone traveling on an expense account actually spends money. And so forth. The result was a horribly clumsy and slow expense reporting system which to my long time analyst’s eye had clearly been designed to meet the requirements of the Legal department with respect to liability and discovery defense. It was a total pain in the ass that absolutely prioritized corporate risk management above functionality.

I finally said to the trainer, “Do any of the senior executives of the company ever have to use this system?” They looked embarrassed and said, “No, they all have admins to do it for them.” My response was, “If our CEO ever has file an expense report himself, we’ll have a new system the next day.”

Life is full of systems like that. Airline check-in processes, for example, are obviously designed to optimize for cost-of-labor, explicitly at the expense of efficiency, usability or the customer experience. Likewise most call centers and help desks. And likewise the entire apparatus of disability management in this country.

I’ve said many times before that our disability system is onerous and punitive, designed with the primary assumption that anyone making a claim is attempting to defraud. It treats people accordingly, and requires all sorts of entirely pointless paperwork and compliance steps from people in their hour of deepest need and least capability. These systems were designed with profit margins, preservation of capital, and fraud management as primary priorities. They were not designed by anyone concerned with helping the poor or disabled, and they certainly were not designed by anyone who ever for a single moment thought they, themselves might fall under the rules being put in place.

So with the ACA. I’m not talking about the issues with healthcare.gov, which are a topic of their own, but the whole clumsy mess built to accomplish a social goal which could have been accomplished much more cheaply and simply through Medicare eligibility expansion. (Among other routes.) All those hundreds of Republican amendments to the law are there to gum up the works, punish sick people for being sick, and poor people for being poor. That’s not what conservatives call it, of course — they have plenty of high minded rhetoric about resource management and audit and reducing dependency — but those are just lies Republicans tell themselves so they can sleep at night in the false belief they are doing the right thing.

But whether you’re talking about the basic Heritage Foundation template of the ACA, the framework written by the Obama administration and Congressional Democrats, or the thousand little land mines planted by the GOP, none of those pieces were designed by people who ever expected to use the system personally.

And thus we have the hot mess ACA we have today. My old employer’s corporate expense reporting mess writ large across the landscape of American society. And for the same reasons. Because the nominal purpose of the project is badly misaligned with the priorities of the people who designed it.

None of the solutions I see to the problems with the disability system or the ACA will ever come to pass. Forcing Congressional Republicans to take themselves and their families solely to public clinics for year is impossible. Privilege protects its own. And asking for empathy is a fool’s errand with modern conservatives, who seem to view empathy as weakness, even a sinful betrayal of principle. At best, a foolish form of compromise.

So, yeah. Solutions designed by people who don’t use them dominate our lives in ways small and great. Enjoy…

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[culture] Social invisibility and mobility

I’ve written about social invisibility before, here and here at a minimum. Being at Comic-con while using an electric scooter for 99% of my mobility needs has introduced me personally to another long-standing form of social invisibility: visible disability.

Not that this is news in the slightest to anyone dependent on a scooter or a wheelchair. It was hardly news to me in the intellectual sense. But experientally, wow…

Let me say first and foremost that the vast majority of people here, both inside the convention and on the streets of San Diego’s Gaslamp District, were either actively helpful or genially indifferent. Almost no one was deliberately rude or obstructive. Which, in a crowd of this size, speaks well of the folks at Comic-con and the citizen of San Diego. Certainly the law enforcement and security personnel connected with the convention were extremely observant, polite and helpful to me.

However, the amount of sheer cluelessness in the standing and walking behavior of my fellow human beings is deeply astounding. When I’m on foot, I don’t suppose I notice the people walking backwards, suddenly sidestepping or reversing direction, walking in one direction while looking the other, or staring at their cell phone as they walk. I mean, they’re present, but I can route around them with a step or two without difficulty, and tend not to even remark on what I’ve just seen.

But when cruising along in a powered chair that weighs over a hundred pounds and does not actually have brakes, these people are a menace to themselves and me.

Likewise people standing in curb cuts, or in narrow passages between (say) a street lamp and a piece of sidewalk signage, or clumping in groups amid a right-of-way. A danger to themselves and others.

The only open rudeness I’ve encountered is those people, the ones standing around, who seem offended to be asked to get out of the curb cut or to please step aside from the middle of the sidewalk. This is the same social philosophy that prompts people to take offense at being asked to stop talking in a movie theater: If they are being inconvenienced, the person inconveniencing them is unspeakably rude. I’ve had a couple of people say in disparaging tones, “Where are you going to go?” The answer to which, if I were feeling confrontational, is “Same place I was going before you got in my way.”

The idea that they could step off the curb, or go around the other side of the lamp post, while I cannot do those things, is just too much for some people. It inconveniences them.

I recall some of these issues when [info]the_child was still of stroller age. But a stroller can be maneuvered off a curb or around an obstacle much more readily than an electric scooter. And the adult pushing the stroller isn’t socially invisible. The guy sitting well below eye level is.

It’s very strange. This is a world I’ll participate in for a few weekends of my life, renting a scooter here and at Worldcon, and that’s about it. But my experience in this powered chair has convinced me that everyone ought to spend a few days in a wheelchair or scooter, just so they can see what we all do and few us ever recognize ourselves as doing.

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[culture] The Boston bombings

First and foremost, my heart sorrows for those caught in the Boston bombings of yesterday. The dead, the injured, their friends and loved ones, the first responders and volunteers; everyone. The date and venue of the attack is just a twist of the knife, I suppose.

I don’t consume broadcast media other than the odd snatch of NPR in the car, or watching online videos of segments which for some reason have been recommended to me or caught my eye. My understanding of the bombings thus far has been from a mix of (mostly) liberal blogs and the some news Web sites, as well as secondary commentary from those sources.

While I have my own private views of what is likely to be uncovered about the perpetrators, I am the first to acknowledge those views are currently not grounded in any facts whatsoever. Therefore I decline to speculate in public pending reliable evidence emerging.

What I will say is this: I hope for swift justice tempered by mercy. I likewise fervently hope that we can avoid another national paroxysm of retributive anger like that engendered by 9-11. Despite our manifold imperfections, we are a nation of laws, and a people who value a moral and orderly world. Our internal disagreements are for the most part about what those ambitions mean.

Please, let America be lawful and orderly in our response to this terrible event.

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[culture] Pharmaceutical Puritans

My insurance plan, like many, has multiple tiers of pharmaceutical co-payments. Most of my drugs cost me $10 per prescription filled or refilled. A few cost me $20. Exactly two cost me $50. Those same two drugs are also the only drugs I have ever been prescribed in my life for which my insurance company limits the number of doses I’m allowed per month below what the doctor prescribed.

That would be Viagra and Levitra.

Ever since my colon surgery in May of 2008, I have had persistent erectile dysfunction. The probable root cause is surgical disruption to the vagus nerve. That, and the effect of being in my later 40s with a lot of medical and life stress, has kept me from ever recovering full functionality.

If and when any organ in my body other than my penis malfunctions, insurance covers everything required. I have co-pays and other minor hassles, but my insurance carrier is consistent and supportive. They have unquestioningly paid for drugs that cost $10,000 per dose, as needed in my chemotherapy regimen, with no co-pay at all because they were dispensed in a clinic.

But when I need a drug to help me enjoy the basics of male sexuality, I’m limited to a handful (or less) of pills per month and charged 2.5 to 5 times what every other drug I’ve ever taken costs me, when I have had a co-pay at all.

Is there any logical reason for this? To my view, this is just the ingrained Puritanism in American culture. Yet another stupid price we pay for the Calvinism in our national DNA. The unwillingness of many people, most of them conservatives, to contribute to the sexual enjoyment of others. Millions for cancer, barely a few cents for a good fuck. I cannot imagine any medical or financial justification for this beyond simple, petty discomfort with human sexuality.

I know perfectly well the sordid history of health insurance and female birth control. I don’t expect much sympathy from female readers, who have borne the full cost of their sexual health for decades, until quite recently. But it’s really the same problem that conservatives so ardently and wrongly tried to smear Sandra Fluke with: people don’t want to think they are paying for other people to have sex.

You know what? I’m just as entitled to sexual health and well being as I am to any other form of health and well being. This is really a minor issue in the symphony of horror which is my cancer experience, but it’s a damned annoying one. The medication restrictions on sexually related drugs are just petty, and serve no purpose other than to make some people, somewhere, feel good about punishing me for having a libido and opportunities to exercise it.

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[culture] A small Gedankenexperiment on healthcare

My experience of being deeply enmeshed in the healthcare system is that a majority of my non-billing paperwork (and a meaningful percentage of my billing paperwork) is intended to ensure that I am qualified to receive certain benefits, and to check my continuing eligibility. Another way to put this is that a majority of the patient-facing overhead of healthcare delivery costs, meaning costs exclusive of actual medical expenses, is about compliance.

A simpler way to put this is that we spend a lot of money making sure only those judged deserving are helped.

From my perspective, the only three things I’ve done in my life that were more paperwork intensive than being a patient in the American healthcare system were to apply for a security clearance, buy real estate, and adopt [info]the_child. I did all of those things successfully while in good health and of sound mind.

Being very ill in America invokes a messy, complex, internally inconsistent system that requires a lot of focus and precision at a time in most people’s lives when they are least equipped to provide those things. If indeed, ever they were. Not everyone is good at paperwork. And this is me, who is not dealing with public benefits and all their myriad oversight requirements, but rather a relatively sane and generous employer and employer-sponsored private benefits plan.

So let’s assume a certain number of claimants are fraudulent. That’s true in every walk of life with every kind of benefit — someone will always be trying to figure out a way to get something for nothing.

What would happen if we simply let those people into the system? If, instead of spending money on compliance we spent that same money on delivery? Would net costs go up or down?

We’d certainly have a system that is much kinder and more supportive to the overwhelming majority of users, its legitimate patients. Instead of punishing the users along with the fraudsters, let’s keep things simple for the people in most desperate need.

Would that cost more or less? I have no idea. But it would be the mark of a compassionate society that values life, liberty and the pursuit of happiness over punishing the undeserving and deserving alike.

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[culture] The Connecticut shootings

I’ve already said most of what I would say about the Connecticut shootings. Now, on chemo when I am cognitively impaired and my filters are compromised, is not the time for me to try to say more. I’ll leave you with one thought of my own, and one from someone else.

Via Twitter, from @ethannichtern: A KNIFE Attack in a Chinese School today WOUNDS 22 Kids, kills NONE. #endofargument http://t.co/w4HnrjS0

As for my part, consider this. Zero guns would equal zero gun violence. By definition. There must be some midpoint between zero and 300,000,000 guns where 30,000 people don’t have to die every year of suicide, homicide and accidental shootings.

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