New Yorker Cartoonist Roz Chast’s Remarkable Illustrated Meditation on Aging, Illness, and Death

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Making sense of the human journey with wit, wisdom, and disarming vulnerability.

“Each day, we wake slightly altered, and the person we were yesterday is dead,” John Updike wrote in his magnificent memoir. “So why, one could say, be afraid of death, when death comes all the time?” It’s a sentiment somewhat easier to swallow — though certainly not without its ancient challenge — when it comes to our own death, but when that of our loved ones skulks around, it’s invariably devastating and messy, and it catches us painfully unprepared no matter how much time we’ve had to “prepare.”

Count on another beloved New Yorker contributor, cartoonist Roz Chast, to address this delicate and doleful subject with equal parts wit and wisdom in Can’t We Talk about Something More Pleasant?: A Memoir (public library) — a remarkable illustrated chronicle of her parents’ decline into old age and death, pierced by those profound, strangely uplifting in-between moments of cracking open the little chests of truth we keep latched shut all our lives until a brush with our mortal impermanence rattles the lock and lets out some understanding, however brief and fragmentary, of the great human mystery of what it means to live.

The humor and humility with which Chast tackles the enormously difficult subject of aging, illness and death is nothing short of a work of genius.

But besides appreciating Chast’s treatment of such grand human themes as death, duty, and “the moving sidewalk of life,” I was struck by how much her parents resembled my own — her father, just like mine, a “kind and sensitive” man of above-average awkwardness, “the spindly type,” inept at even the basics of taking care of himself domestically, with a genius for languages; her mother, just like mine, a dominant and hard-headed perfectionist “built like a fire hydrant,” with vanquished dreams of becoming a professional pianist, an unpredictable volcano of anger. (“Where my father was tentative and gentle,” Chast writes, “she was critical and uncompromising.” And: “Even though I knew he couldn’t really defend me against my mother’s rages, I sensed that at least he felt some sympathy, and that he liked me as a person, not just because I was his daughter.”)

Chast, like myself, was an only child and her parents, like mine, had a hard time understanding how their daughter made her living given she didn’t run in the 9-to-5 hamster wheel of working for the man. There were also the shared family food issues, the childhood loneliness, the discomfort about money that stems from having grown up without it.

The point here, of course, isn’t to dance to the drum of solipsism. (Though we only children seem particularly attuned to its beat.) It’s to appreciate the elegance and bold vulnerability with which Chast weaves out of her own story a narrative at once so universally human yet so relatable in its kaleidoscope of particularities that any reader is bound to find a piece of him- or herself in it, to laugh and weep with the bittersweet relief of suddenly feeling less alone in the most lonesome-making of human struggles, to find some compassion for even the most tragicomic of our faults.

From reluctantly visiting her parents in the neighborhood where she grew up (“not the Brooklyn of artists or hipsters or people who made — and bought — $8 chocolate bars [but] DEEP Brooklyn”) as their decline began, to accepting just as reluctantly the basic facts of life (“Old age didn’t change their basic personalities. If anything, it intensified what was already there.”), to witnessing her father’s mental dwindling (“One of the worst parts of senility must be that you have to get terrible news over and over again. On the other hand, maybe in between the times of knowing the bad news, you get to forget it and live as if everything was hunky-dory.”), to the self-loathing brought on by the clash between the aspiration of a loving daughter and the financial strain of elder care (“I felt like a disgusting person, worrying about the money.”), Chast treks with extraordinary candor and vulnerability through the maze of her own psyche, mapping out our own in the process.

Chast also explores, with extraordinary sensitivity and self-awareness, the warping of identity that happens when the cycle of life and its uncompromising realities toss us into roles we always knew were part of the human journey but somehow thought we, we alone, would be spared. She writes:

It’s really easy to be patient and sympathetic with someone when it’s theoretical, or only for a little while. It’s a lot harder to deal with someone’s craziness when it’s constant, and that person is your dad, the one who’s supposed to be taking care of YOU.

But despite her enormous capacity for wit and humor even in so harrowing an experience, Chast doesn’t stray too far from its backbone of deep, complicated love and paralyzing grief. The book ends with Chast’s raw, unfiltered sketches from the final weeks she spent in the hospice ward where her mother took her last breath. A crystalline realization suddenly emerges that Chast’s cartooning isn’t some gimmicky ploy for quick laughs but her most direct access point to her own experience, her best sensemaking mechanism for understanding the world, life and, inevitably, death.

Can’t We Talk about Something More Pleasant? is an absolutely astounding read in its entirety — the kind that enters your soul through the backdoor, lightly, and touches more parts of it and more heavinesses than you ever thought you’d allow. You’re left, simply, grateful.

Images courtesy of Bloomsbury © Roz Chast; thanks, Wendy

After you’re gone, what happens to your social media and data?

Web of the dead: When Facebook profiles of the deceased outnumber the living

Web of the dead: When Facebook profiles of the deceased outnumber the living

There’s been chatter — and even an overly hyped study — predicting the eventual demise of Facebook.

But what about the actual death of Facebook users? What happens when a social media presence lives beyond the grave? Where does the data go?

The folks over at WebpageFX looked into what they called “digital demise,” and made a handy infographic to fully explain what happens to your Web presence when you’ve passed.

It was estimated that 30 million Facebook users died in the first eight years of the social media site’s existence, according to the Huffington Post. Facebook even has settings to memorialize a deceased user’s page.

Facebook isn’t the only site with policies in place to handle a user’s passing. Pinterest, Google, LinkedIn and Twitter all handle death and data differently. For instance, to deactivate a Facebook profile you must provide proof that you are an immediate family member; for Twitter, however, you must produce the death certificate and your identification. All of the sites pinpointed by WebpageFX stated that your data belongs to you — some with legal or family exceptions.

Social media sites are in in general a young Internet phenomena — Facebook only turned 10 this year. So are a majority of their users. (And according to Mashable, Facebook still has a large number of teen adapters.) Currently, profiles of the living far outweigh those of the dead.



However, according to calculations done by XKDC, that will not always be the case. They presented two hypothetical scenarios. If Facebook loses its “cool” and market share, dead users will outnumber the living in 2065. If Facebook keeps up its growth, the site won’t be a digital graveyard until the mid 2100s.

Check out the fascinating infographic here.

h/t Mashable

http://www.salon.com/2014/06/24/web_of_the_dead_when_facebook_profiles_of_the_deceased_outnumber_the_living/?source=newsletter

The Afterlife of Pia Farrenkopf

March 27, 2014

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Sometime in early 2009, Pia Farrenkopf died in the back seat of her Jeep, which was parked in the garage of her home. Around her, life in the suburban community of Pontiac, Michigan, went on. No one knew that she’d died. By all accounts, her neighbors hadn’t known her very well, though some of them would mow her grass when it got too high, according to a report in USA Today. They kept on doing so for five years, until, last month, her body was finally discovered.

Neighbors told reporters that Farrenkopf travelled abroad for business, which is why, they assumed, they never saw her, and had taken it upon themselves to manicure her lawn. Farrenkopf had left her job as a contractor with Chrysler Financial a few months before her death, according to USA Today, so no one was expecting her at work. Her family lived far away and had lost touch with her, according to Reuters.

Farrenkopf also had a bank account with a very large sum in it, and—this is the postmodern crux of the story—she had set up her mortgage and utility bills to be paid automatically from it. As her body decomposed in her garage, the funds went out regularly. Last year, Farrenkopf’s money finally ran out. Her mortgage payments stopped, and the bank foreclosed on the house. Earlier this month, a contractor employed by the bank was examining the home when he discovered Farrenkopf’s body—which has been called “mummified”—in her car in the garage. Since then, police have been attempting to piece together the details of her life and death, to find some answers to the mystery of who she was and why she is gone.

Between those two moments—when she died and when her body was discovered—she was a kind of Schrödinger’s cat, biologically dead but also, in a way, among the living, paying for her power and phone, the roof over her head. Until her body surfaced, Farrenkopf’s institutional ties were the only things keeping her “alive.”

Farrenkopf had a kind of institutional doppelgänger, as do we all: a presence that forms as we post on social media, shop online, send e-mails, and use the Internet for paying bills, banking, and dozens of other financial and technological transactions. Some of us have more than one. The institutional doppelgänger is hard to see because it shadows our everyday lives so closely. Every so often, though, the curtain twitches, reminding us of its existence. The term “identity theft” is a curious one, describing a scenario in which the doppelgänger—not the most obvious you, with your weird cuticles and inner monologue and assorted love problems, but that other you, who has a Social Security number and neatly profiled buying habits and a checking account at Bank of America—can be hijacked by an utter stranger, compromised, put on the market, sold, and used to buy three MacBook Airs, all while you’re sitting on your couch Netflix-bingeing on “Star Trek: The Next Generation.”

In Farrenkopf’s case, these odd circumstances seem less like a moral issue—no one would argue that there was maliciousness on the part of the utility companies or the bank, which can hardly be expected to consult their paying customers on a regular basis to make sure that they haven’t shuffled off this mortal coil—and more like a mundane aspect of the digital age.

Karl Marx believed that the product of human labor was separate from and hostile toward its maker. The same might be said of the product of our commercial activities on the Internet. You might not believe that your institutional doppelgänger works against you, but it does not seem like a stretch to argue that the sum of your activity as a consumer—your social-media posts, credit history, the freakishly accurate profile advertisers have of you—is its own creature, and can move about independently of you. You can also assign any number of automated tasks to your doppelgänger, which it will perform tirelessly.

In “Haunted Media: Electronic Presence from Telegraphy to Television,” Jeffrey Sconce writes that the digital world has raised many questions about the dissociation of our minds, bodies, space, and time. Our culture has been obsessed with the idea that consciousness can be transmitted—that it can be separated from a person’s body—since the advent of the telegraph. It’s just gotten more intense in the past few decades. He points out that much of our science-fictional language about the actual transfer of human consciousness via electricity is just that—fictional—but, at the very least, something can be learned about our cultural dependence on ideas of identity existing beyond the body. Our institutional doppelgängers might not be sentient or spiritual—Farrenkopf’s spirit didn’t somehow live on in her online transactions—but they are a part of modern existence, and tell us something about the way we mete out pieces of our lives. Technology gives us the ability to rely on automatic processes, and we are only too happy to do so. It is no surprise that such dependence came together in such a dystopian fashion; perhaps the surprise should be that it didn’t happen sooner.

On a Facebook page dedicated to Farrenkopf’s story, among the posts with information about the investigation, a woman who identifies herself as Farrenkopf’s niece gives us bits of her aunt’s life—letters from old co-workers, details about her extended family, a black-and-white high-school photograph. Our institutional doppelgängers are real—but, as Farrenkopf’s story unfolds, it is a reminder that they are not us.

Photograph by Daniel Mears/Detroit News/AP.

http://www.newyorker.com/online/blogs/currency/2014/03/the-afterlife-of-pia-farrenkopf.html?utm_source=tny&utm_campaign=generalsocial&utm_medium=google+&mbid=social_google+

Don’t Want to Die? Just Upload Your Brain

March 5, 2014, 11:32 PM
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l haven’t seen “Her,” the Oscar-nominated movie about a man who has an intimate relationship with a Scarlett Johansson-voiced computer operating system. I have, however, read Susan Schneider’s “The Philosophy of ‘Her’,” a post on The Stone blog at the New York Times looking into the possibility, in the pretty near future, of avoiding death by having your brain scanned and uploaded to a computer. Presumably you’d want to Dropbox your brain file (yes, you’ll need to buy more storage) to avoid death by hard-drive crash. But with suitable backups, you, or an electronic version of you, could go on living forever, or at least for a very, very long time, “untethered,” as Ms. Schneider puts it, “from a body that’s inevitably going to die.”

This idea isn’t the loopy brainchild of sci-fi hacks. Researchers at Oxford University have been on the path to human digitization for a while now, and way back in 2008 the Future of Humanity Institute at Oxford released a 130-page technical report entitled Whole Brain Emulation: A Roadmap. Of the dozen or so benefits of whole-brain emulation listed by the authors, Andrew Sandberg and Nick Bostrom, one stands out:

If emulation of particular brains is possible and affordable, and if concerns about individual identity can be met, such emulation would enable back‐up copies and “digital immortality.”

Scanning brains, the authors write, “may represent a radical new form of human enhancement.”

Hmm. Immortality and radical human enhancement. Is this for real? Yes:

It appears feasible within the foreseeable future to store the full connectivity or even multistate compartment models of all neurons in the brain within the working memory of a large computing system.

Foreseeable future means not in our lifetimes, right? Think again. If you expect to live to 2050 or so, you could face this choice. And your beloved labrador may be ready for upload by, say, 2030:

A rough conclusion would nevertheless be that if electrophysiological models are enough, full human brain emulations should be possible before mid‐century. Animal models of simple mammals would be possible one to two decades before this.

Interacting with your pet via a computer interface (“Hi Spot!”/“Woof!”) wouldn’t be quite the same as rolling around the backyard with him while he slobbers on your face or watching him dash off after a tennis ball you toss into a pond. You might be able to simulate certain aspects of his personality with computer extensions, but the look in his eyes, the cock of his head and the feel and scent of his coat will be hard to reproduce electronically. All these limitations would probably not make up for no longer having to scoop up his messes or feed him heartworm pills. The electro-pet might also make you miss the real Spot unbearably as you try to recapture his consciousness on your home PC.

But what about you? Does the prospect of uploading your own brain allay your fear of abruptly disappearing from the universe? Is it the next best thing to finding the fountain of youth? Ms. Schneider, a philosophy professor at the University of Connecticut, counsels caution. First, she writes, we might find our identity warped in disturbing ways if we pour our brains into massive digital files. She describes the problem via an imaginary guy named Theodore:

[If Theodore were to truly upload his mind (as opposed to merely copy its contents), then he could be downloaded to multiple other computers. Suppose that there are five such downloads: Which one is the real Theodore? It is hard to provide a nonarbitrary answer. Could all of the downloads be Theodore? This seems bizarre: As a rule, physical objects and living things do not occupy multiple locations at once. It is far more likely that none of the downloads are Theodore, and that he did not upload in the first place.

This is why the Oxford futurists included the caveat “if concerns about individual identity can be met.” It is the nightmare of infinitely reproducible individuals — a consequence that would, in an instant, undermine and destroy the very notion of an individual.

But Ms. Schneider does not come close to appreciating the extent of the moral failure of brain uploads. She is right to observe an apparent “categorical divide between humans and programs.” Human beings, she writes, “cannot upload themselves to the digital universe; they can upload only copies of themselves — copies that may themselves be conscious beings.” The error here is screamingly obvious: brains are parts of us, but they are not “us.” A brain contains the seed of consciousness, and it is both the bank for our memories and the fount of our rationality and our capacity for language, but a brain without a body is fundamentally different from the human being that possessed both.

It sounds deeply claustrophobic to be housed (imprisoned?) forever in a microchip, unable to dive into the ocean, taste chocolate or run your hands through your loved one’s hair. Our participation in these and infinite other emotive and experiential moments are the bulk of what constitutes our lives, or at least our meaningful lives. Residing forever in the realm of pure thought and memory and discourse doesn’t sound like life, even if it is consciousness. Especially if it is consciousness.

So I cannot agree with Ms. Schneider’s conclusion when she writes that brain uploads may be choiceworthy for the benefits they can bring to our species or for the solace they provide to dying individuals who “wish to leave a copy of [themselves] to communicate with [their] children or complete projects that [they] care about.” It may be natural, given the increasingly virtual lives many of us live in this pervasively Internet-connected world, to think ourselves mainly in terms of avatars and timelines and handles and digital faces. Collapsing our lives into our brains, and offloading the contents of our brains to a supercomputer is a fascinating idea. It does not sound to me, though, like a promising recipe for preserving our humanity.

Image credit: Shutterstock.com

http://bigthink.com/praxis/dont-want-to-die-just-upload-your-brain

People with a death-wish

February 12, 2014, 11:55 AM
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ONE of my childhood buddies died unexpectedly at the age of eighteen. That was many years ago, in Hamm, Germany. While alive, he was a known brawler, a brutish drunk, and a pot-head. His parents divorced, he dropped out of high school, had a lady who supported him, collected music on vinyl, did shoplifting for a while, and he always had this excruciating wish to die gloriously: “I won’t turn 30!” he once bragged, and: “I enlist in the army, if I have to!” His boldness, his fearlessness, and the unbending commitment toward his own ruin left a deep impression on me.

Lots of young men I knew quit. A Chinese MA candidate, barely twenty-two years of age, at the University of Edinburgh, once had dinner with us, then, two weeks later on the second day of Christmas, we heard news that he jumped off his 8-story dormitory building. “Tade yunqi bu hao,” they would say –his luck left him. His fate was cut and sealed in China already, where his overbearing parents had him prepared for a career in law, a decision that evidently crushed his soul. He probably didn’t even comprehend how he, the only-child of Chinese farmers, a burned-out, hopelessly damaged adolescent, could end up lying on the cold pavement of Richmond Place, in the capital of Scotland. His life made little sense to him -it was kaput.

Another fellow, a sturdy Scotsman, frequently got so boozed up, we thought his self-destruction had a rather cunning plot to it. He was intelligent, yet cared little about his safety, letting alone his health of which he seemed to have stashed away plenty. During a trip to Australia, however, he got himself the worst for a drink. Canned and wasted, he fell into a comatose state and refused to wake up when the fire alarm begged him to do so. “And if this hadn’t happened,” rumors said, “he would still be doing dangerous things.”

The list goes on. At Peking University, a doctoral candidate in his decisive, final year panicked over his flawed thesis and committed zisha. His desk in his tiny dorm room was allegedly plastered with those yellow motivational self-stickers –with quotes from successful people like US rapper 50 Cents’ “Get Rich or Die Tryin.” People say the candidate spent eight years in solitary, had no hygiene, no friends, and no reason to go on living. Other graduates attain more posthumous fame – like Hai Zi. He destroyed himself at the age of twenty-five; only to become one of Beijing’s most celebrated dead poets.

Literature, to be sure, is full with people dominated by self-destructive behavior. And it is certainly true that we admire people who died for a cause like, say, Socrates, Jesus, or Hannibal; we even worship this class of artists who single-mindedly minister to their doom, either by way of overwork and exhaustion, or from carrying soul-devouring, shameful secrets –Vincent Van Gogh, Novalis, and Nietzsche come to mind. And, yes, we also delight in building legends around performers and musicians who were evidently haunted by mania, depression, and severe addiction – James Dean, Elvis Presley, Kurt Cobain, Jim Morrison, Leslie Cheung, Marilyn Monroe, Yukio Mishima, or the late Philip Seymour Hoffman- to name but a few.

Death can be seen as climax or as the final act; alas, it all boils down to this: Do we want, metaphorically speaking, to die in battle when we were strongest, or do we prefer to run and wait for the Reaper to drive by our nursing home when we are at our weakest? Both are legitimate ends to Man.

All those people above, famous or not, often entertained unrealistic goals, had low self-esteem, severe mental problems, or they simply got lost in life. Most others hang on to it, though, as long as they still see an iota of hope, another gig they could achieve, another moment of bliss that will extend their welcome; they keep going on with life which Buddhist know is mostly about suffering. Arthur Schopenhauer, the German philosopher of existentialism, rather pessimistically interpreted all this as the unbound Will to Live; but the truth is, some people are just procrastinating a feverishly diabolical and incurable wish to die.

Image credit: Martien van Gaalen/Shutterstock.com

Ohio man’s wish fulfilled as he is buried on motorcycle

Ohio man's wish fulfilled as he is buried on motorcycle

The dying wish of an Ohio motorcycle aficionado that he be buried astride his beloved Harley-Davidson was fulfilled by his family — although it wasn’t easy.

Billy Standley’s body was prepped by five embalmers with a metal back brace and straps, The Dayton Daily News reported. He was affixed on top of his bike – a 1967 Electra Glide cruiser– which was then placed inside a Plexiglas casket. For five years, the box stayed in Standley’s garage, one of his sons told the newspaper.

Standley also had to buy additional burial plots that could accommodate the casket.

His family told the paper he had planned the funeral for years.

Standley died of lung cancer Sunday at the age of 82.

Strange Past: Post Mortem Photography

Jan 062014
BLOGGER COMMENT:  Our family used to photograph deceased loved ones (in the coffin at the funeral parlor). I never thought it morbid. Within my father’s memory funerals were held at home in the living room or parlor and most people died at home. Now, death is a verboten subject. The sick die in hospital, are quickly burnt to ash, and all of it is out of sight and mind as much as possible. However, no matter how much you try to prolong youth and live in denial of death, it comes to us all….sooner or later:)

 

Strange Past: Post Mortem Photography

by Steve Huff

Over the last 20 years I have taken probably close to 400,000 photographs. Many of them just for this blog in reviews and my various travels and others that were snapped over the years of my family, vacations, and life in general. But over these years I have also read many books, browsed the works of others and have also researched the history of photography. One subject that I was always amazed by (although it used to creep me out) is “Post-Mortem Photography”.

Yes, taking portraits of the recently deceased. Back in the Victorian ages it was common to have a family portrait taken when someone in the family died. The invention of the daguerreotype in 1839 made it more affordable to families who wanted to remember their loved ones after they have passed.

It was not common for families back then to be able to take a snapshot of their families as not many could afford to hire out someone on a regular basis to take shots/portraits, so for most, this was reserved for death. Cameras as we know them today were not invented yet so having a photo of a loved one was a special gift that was treasured and the only way for someone to really remember the physical person they once knew and loved.

When you look back at this early practice today it seems morbid, creepy and for some..it will seem just plain wrong. When I sit back, close my eyes and transport my mind back to the early 1800′s I can picture how people lived, worked and died. If I lived back then I would probably want a photo of my deceased family member or pet as well. Remember, memories in print were just not common so having even one photo would mean so much.

Today we take the power of a camera, a digital sensor or a roll of film for granted. Because technology is everywhere and is getting more and more crazy by the day we have everything at our fingertips and can access any information at any given time, no matter where we are. Many of us forget what photography really is all about.

Back in the 1800′s there was virtually no type of conveniences to be found, not even photography so what we may perceive as creepy today, was very normal back in the 1800′s.

But do not think that this practice is 100% gone from todays society. In fact, when I was a teen I remember going to a funeral of a relative of mine and his family was taking photos of him in his coffin. Entire family portraits as well. Even today there are some who do this. I think for the most part it is no longer done because we have the ability to take photos of our loved ones every day if we so desire, so remembering them as they were in life is always better than remembering them after death.

As for death, I personally do not fear death in any way, shape or form as I know it is coming eventually, but that is another story for another day. As for post-mortem photography, take a look at some classic examples below and let me know how YOU feel about these photos that were so normal back in the early 1800′s.

But beware, some of these are disturbing and may upset some of you who are very sensitive. So take a peek at your own risk.

A Post-Mortem photo session from the 1800′s

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Brothers and sisters posing with their deceased sibling.

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The girl in this photo is deceased and has been posed with her dolls around her.

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A mother posing with her deceased daughter

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Open Data (the Legacy of Aaron Swartz)

December 21, 2013, 6:00 AM
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On this blog we are looking at the ideas that had the greatest impact in 2013 and testing them out to see what their impact will be in 2014 and beyond. A good place to start is this post by Neurobonkers, a tribute to the late Aaron Swartz, from January, 2013. 

Neurobonkers wrote:

This is the first obituary I have ever written, as this is the first death of a public figure who I have never known, that has profoundly saddened me as the death of Aaron Swartz has done. With Swartz’ talent, he could have made huge amounts of money for himself. Instead he selflessly spent his time campaigning for freedom of information and risked everything on his mission to liberate data.

The ideas that Swartz fought for were wide-ranging, but they all fall under the proud banner that information wants to be free. What landed Swartz in trouble with the authorities was his belief that the public should have access to federal court documents as well as access to scholarly research that was being put behind paywalls. Read Neurobonker’s original post for a full examination of this idea here.

So what came of this idea? Swartz committed suicide, and his family released a statement blaming intimidation and prosecutorial overreach for his death. And yet, Swartz’s big idea has lived on. As Neurobonkers reported a few days after his original post, the Internet was beginning to finish the job that Swartz started, as academics began posting their research papers online for free using the Twitter hashtag #PDFTribute.

At the time of his death, Swartz was developing a system called DeadDrop that would allow whistleblowers to anonymously leak documents to journalists. This project has since been taken over by The Freedom of the Press Foundation. It is called SecureDrop.

In addition, numerous events, including this one, have been organized to carry out the work and legacy of Aaron Swartz into 2014 and beyond.

DIY Death: Natural, At-Home Funerals And Their Boomer Appeal

November 22, 2013 | 9:26 AM | 

WELLFLEET, Mass. – When 20-month-old Adelaida Kay Van Meter died of a rare genetic disease last winter, her father, Murro, gently carried her body out of the house to his wood shop in the pines near Gull Pond. He placed her in a small cedar box and surrounded her with ice packs. For three days, the little girl’s grieving parents were able to visit her and kiss her and hug her. Then, on the third day, after the medical examiner came to sign the last bit of paperwork, Van Meter and his wife, Sophia Fox, said good-bye to their baby, screwed the lid on the box and drove to a Plymouth, Mass. crematorium, where they watched the little coffin enter the furnace.

“We took care of Adelaida when she was an infant, we took care of her when she was healthy, we advocated for her in the hospital, we took care of her when she was sick,” her father said. “Why wouldn’t we take care of her when she was dead?” Sophia Fox added: “There was no way I was going to hand her over to some stranger at a funeral parlor where she’d be put in a refrigerator with a bunch of other dead bodies. This way was so much more natural. We saw the life leave her body and we were better able to let go.”

Death remains a topic that many of us would rather avoid. And when it comes to the actual nuts and bolts of caring for the dead, most of us tend to think it’s best — and furthermore, required by law — to let professional funeral arrangers handle the arrangements.

Well, it turns out that in most states it’s perfectly legal to care for your own dead. And, with new momentum to shatter longstanding taboos and stop tip-toeing around death — from “death with dignity” measures sweeping the country to projects promoting kitchen table “conversations”about our deepest end-of-life wishes — a re-energized DIY death movement is emerging.

This “personal funeral” or “home death care” movement involves reclaiming various aspects of death: for instance, keeping the dead body at home for some time rather than having it whisked it away; rejecting embalming and other environmentally questionable measures to prettify the dead; personally transporting a loved one’s corpse to a cemetery; and even, in some cases, home burials. Families are learning to navigate these delicate tasks with help from a growing cadre of“death midwives” “doulas” or “home death guides.”

(Courtesy Murro Van Meter)

When Adelaida Van Meter died last winter, her parents kept her little body at home for three days to say good-bye. (Courtesy Murro Van Meter)

The DIY death movement is loosely knit, and motivations vary, ranging from environmental concerns to religious or financial considerations. (Traditional funerals can cost around $10,000 or more; when you do-it-yourself, the cost can be reduced into the hundreds, experts says.) Each case is fiercely personal — there’s no playbook — but they all share a very intimate sense that death should unfold as a family matter, not as a moment to relinquish loved ones to a paid stranger or parlor.

This Is Legal?

The highly personal nature of home funerals appealed to Janet Baczuk, 58, of Sandwich, Mass. So, when her 93-year-old father, Stephen, died in September, 2011, she said, “I thought, I’d like to do that for my dad.” “It’s more humane, more natural…and more environmentally sound.”

Baczuk and her sister washed their father’s dead body using essential oils, and got a permit to drive the corpse to the cemetery in their (covered) pickup truck. A World War II veteran, Stephen Baczuk was buried at Massachusetts National Cemetery in Bourne, where officials allowed his simple pine and cherry casket to be placed directly on the ground, covered by an inverted concrete vault with no lid, “like a butter dish,” Baczuk said. When her mother died back in 2006, Baczuk said, she had no inkling that home funerals were an option — but wishes she did. “I didn’t know it could be done,” she said. “I think a lot of lay people don’t know this is legal or possible.”

She’s right.

“When it comes to death, it doesn’t matter where you are on the scale of education or socioeconomics, many people are shocked to find that it’s legal to care for your own dead at home,” says Josh Slocum, Executive Director of the Funeral Consumers Alliance, a Burlington, Vermont, nonprofit that works on all aspects of funeral education, from helping consumers reduce costs to advocating on DIY methods. “And I think this speaks to how distant death has become for us in just over a century. In the late 1800s, even turn of the century, caring for the dead was as prosaic and ordinary as taking care of the children or milking the farm animals.”

Slocum offers this analogy: If a woman wants to run a restaurant, she needs approval from the health department and officials, of course, would be permitted to inspect her kitchen. But the health department would have no jurisdiction over the same woman’s own kitchen at home. “They cannot come in and tell her that her refrigerator is subpar, and they have no authority to tell her she is not allowed to cook dinner for her kids. They can’t compel her to order dinner from a commercial, licensed restaurant,” Slocum says. “The same holds with state funeral regulatory boards. Their job is to ensure public welfare and protect paying consumers. Bizarrely, however, many think their jurisdiction extends to telling families they must pay an unwanted third party funeral home to do something the family could do for themselves.”

Kyle Gamboa, 1995-2013 (Courtesy Kymberlyrenee Gamboa)

Kyle Gamboa, 1995-2013 (Courtesy Kymberlyrenee Gamboa)

What characterizes the DIY death experience is that it’s so very personal.  Consider these vastly different snapshots:

• In northern California, Kimberlyrenee Gamboa’s son Kyle committed suicide by jumping off the Golden Gate Bridge in September, three weeks into his senior year in high school. A seemingly happy 18-year-old with lots of friends and into competitive lasertag, Kyle’s death was such a shock, his mother said, she doesn’t know how she’d have managed it through a typical funeral. Instead, with help from her church and and home death guide, Heidi Boucher, Kyle’s body was returned to the family home one day after his death. Boucher washed Kyle and helped arrange the body on dry ice changed every 24 hours; she gathered information to fill out Kyle’s death certificate and managed all coordination with the mortuary. For three full days, Kyle’s body lay in the family living room in an open casket, not embalmed. During that time, day and night, surrounded by pictures and candles and flowers, all of his friends and family could say good-bye and remember his short life. For Kyle’s mother, that time was critical to her healing.

“If I had to hand him over to funeral parlor, have him embalmed and get two hours on a Tuesday afternoon for everyone to see him — I couldn’t have done that,” she said. “It would have been extremely hard, not only for me, but for everyone who knew him…I still have my ups and downs, but I had three more days with my son — of him physically being there and accessible to me. I didn’t want to leave the house because I knew these were my last three days with him. Until you go through it, you don’t realize how very important that time is for your healing.”

• Kanta Lipsky, a yoga teacher in West Tisbury on Martha’s Vineyard, compared her 66-year-old husband John’s “home death” to a “home birth.” “A couple of days before I could see it coming,” Lipsky says. When he died of cancer in March 2011, she said, a nurse from the local hospital prepared his body. “We did a very beautiful ceremony at the house. Friends came over to wash John’s body, a rabbi said prayers during the washing. There was lots of water and towels all over the floor. We put him in the traditional Jewish white loose pajamas; my tradition is Hindu, so we placed rice balls in the casket and had a garland of roses. We did a waving of lights and we all sang — there were 20-25 people in the house.  He was wrapped in beautiful comforter, and we lifted him up and passed him hand to hand through hallway. It was very moving…It was like a home birth, but it was a home death, very hands on…there were no rules, it just unfolded, evolved and we all felt really comfortable with it…it was such an easy slipping out, his spirit just slipped right out and we were with him, it was a part of life.”

• In Hubbardston, Mass. near Worcester, it took three months of haggling with town officialsbefore Paul Flint was allowed to bury his 14-year-old stepson, who died in a car accident in 2011, on the family’s property. Because the accident happened in Minnesota, Flint said, the family was keen on having the boy, Daniel Davis, laid to rest at home. “My wife wanted him buried on the property,” Flint said. “There’s a couple of favorite spots he liked and he’s buried there, near the rope bridge across the creek.”

Even Bill Cosby chose to bury his son the family property in Shelbourne, Mass., “beneath the hills and trees where young Ennis played as a child.”

Not All Victorian Sitting Rooms and Cadillacs

Obviously, families taking care of their dead loved ones isn’t new. Indeed, it was the norm until the last quarter of the 19th century, when a burgeoning funeral industry evolved. Today, “the funeral business is so effectively insulated from free-market competition that many families can’t even imagine a funeral home free of faux-Victorian sitting rooms and a fleet of Cadillacs,” writes Slocum, also the co-author of Final Rights: Reclaiming the American Way of Death.

The home funeral movement isn’t new either, Slocum says (think of Jessica Mitford’s The American Way of Death and on to the funeral business reformers of the 1960s and 70s). But even as interest grows in the DIY death movement, many people still believe that death should be left to the professionals. “Americans have a neurotic relationship with death,” Slocum says. “Most people are convinced they are physically or emotionally unable to handle it.” He says death should be no more legally controversial than any other “do it yourself” matter:

We’d never put up with this in any other sphere; it would be laughable to contemplate state workers going around forcing citizens to go to Jiffy Lube instead of changing their own oil, or to hire licensed daycare workers instead of staying home with the kids. But that’s what some funeral boards do. The only reason we accept this is that we’re so psychologically removed from and afraid of death that we assume such absurdities are normal even when we’d recognize how ridiculous they are in any other context.

But emotional complexity is another story. Many people are profoundly grateful to leave funeral arrangements to outside professionals. Still, there’s often an assumption that the grieving are simply too fragile to cope with death head on.

While caring for his wife through late stage melanoma, another Cape Cod man, Grey, made a decision: in discussions with his dying wife and daughters the family decided to keep her body at home after death. But when Grey told a hospice worker what he planned to do, he said the worker spent half an hour on the phone trying to talk him out of it: “She said, ‘You’re going to be distraught and you’re going to have your wife’s dead body in the house and…you may think you can handle this, but so many things can go wrong, I think you should reconsider.’”

In the end, though, Grey stuck to his plan: he had attended to his wife at home through her brutal illness, and it was almost a relief (at least for a short time) to care for her after death, when she was no longer in pain. Grey and his daughters bathed her body with lavender oil, built her a cedar coffin and watched over her for three days in the house before taking her to the crematory. “We all felt it was a very important ritual. I’m glad we did it that way,” he said, but noted, “it’s definitely not for everybody.”

A National Movement

As a measure of how DIY death has flourished, Slocum says, ten years ago there were a handful of (mostly women) around the country helping families learn about home funerals. Now there’s a nationwide organization, the National Home Funeral Alliance, with about 300 members, a code of ethics and rules governing their practices (they can charge for educating individuals and families privately or at workshops, for instance, but can’t act as pseudo funeral directors.)

At their fourth annual meeting last month, about 70 home death guides, hospice nurses, doctors, students and funeral directors met in Raleigh, North Carolina, to talk about home death care and green burials, among other topics, says Lee Webster, vice president of the NHFA and a home funeral guide in Plymouth, New Hampshire. They also tried to figure out a way to more systematically collect data on home death care and build a central repository for consumer information.

Webster, a longtime hospice volunteer, says while data-gathering remains tricky, it’s clear the  movement is growing. “There’s an explosion” of interest in home funerals or blended, hybrid funerals with some elements done personally and some left to traditional funeral directors, she says.

What’s driving this explosion? It’s a Boomer thing, according to Webster. “This is the generation that fought for breast-feeding in public and home births; and they want to bring back the idea of a natural death. It’s the ethic of this generation.”

Ecopods and Banana Leaf Urns

Cost and the environment are also driving factors. People like the idea of “fewer chemicals, no rainforest woods and Chinese steel,” Webster says, noting that when you avoid embalming you’re not “draining blood into the public septic system and not subjecting loved ones to violent procedures — the embalming process is quite brutal — just for cosmetic reasons and for no health benefits.”

(One casket designer in Arlington, Mass., for instance, offers artist-embellished Ecopods for burials, hand-made from recycled paper and covered with materials of silk-and-mulberry, as well as biodegradable coffins, caskets, and urns made of paper mache, bamboo, banana leaf, wicker, and cardboard.)

Webster adds: “Once people’s fears are relieved about body care, body mechanics, smells and fluids, a light goes off and they say, ‘Why would I not want to do this?” Even while many of us shudder at the prospect,  Webster says the dead “can be very beautiful. To go back to the birth model: it’s like birthing people out in as natural a way as possible.”

You might think there’d be some funeral industry push-back against all this embrace of more personal, no-frills death care. (Of course, with no national numbers, it’s hard to know how many people are actually embracing the trend.) Still, it doesn’t seem like the industry is particularly threatened.

Daniel Higgins, a second-generation funeral director in Rockland, Mass., and spokesperson for the National Funeral Directors Association, said he doesn’t have any direct experience with families interested in home funerals, but has no problem with people making their own choices.

Indeed, he said, more families want to personalize even traditional funerals to better reflect their lives. For instance, he said, last year he helped arrange a memorial service at a local golf course. The dead man, a golf fanatic, was cremated and placed in a biodegradable urn in the main pond at the course. “Several hundred people gathered around the pond,” Higgins said. “And all his friends hit a golf ball into the pond with a personal message as a final goodbye.”

The My-Choice Generation

Heidi Boucher, who says she’s helped over 100 families care for their dead loved ones, is completing a film, In The Parlour: The Final Goodbye, about the “resurgence” of the home death movement. A home death guide for over 25 years, she says: “I’ve watched from only a handful of us doing this in this country…to now, when it’s become vogue. A lot of this generation, we’re the ones who took control of where we’re going to send our kids to school, what car to drive. Our generation is the one that wants to find out what’s in it before we eat it.”

One problem is that states and local municipalities are all over the map when it comes to regulating death.

There remain nine states with laws or other impediments (from requiring a funeral director’s signature on a death certificate, to mandating that a funeral director be present at the final disposition of the body) that make it difficult for families who want to care for their own dead, Josh Slocum says.

On the other end of the spectrum, the state of Massachusetts offers clear instructions for home funerals right on its website, including what you need for a death certificate, guidance on burials and preparing the body. “The human body decomposes rapidly after death,” the website says. “Care must be taken to keep the body as cool as possible in order the slow the decomposition that results in noxious odors and the leakage of body fluids from body orifices. A human body can be kept in a cool room at least 24 hours before decomposition begins. Heat in the room should be turned off in winter, and air conditioning should be turned on in summer.”

Reclaiming A Death Tradition

But even in an evolved state like Massachusetts, many families’ first reaction to home funerals is something like: “‘You mean that’s legal?!’ says Heather Massey, a longtime home funeral guide who runs the education and consulting center “In Loving Hands” on Cape Cod. Massey says her goal is the creation of a robust home death support system, “a volunteer care circle, comprised of community members trained and experienced in home funerals, who can in turn assist and guide other families who wish to care for their own at death, thereby truly bringing this loving tradition back into the hands of family and community.”

For Adelaida Van Meter’s parents, taking personal control of their daughter’s death was “imperative,” said Sophia Fox. There were some obstacles, however. “I had several funeral homes tell me over the phone that what I was trying to do was illegal,” Van Meter said. “I didn’t try to argue with them, I just hung up.”

Eventually, with help from a pediatric social worker and Heather Massey, the family was able to fill out all the required paperwork and keep the baby’s body at home after she died.

I recently emailed Murro to check in and see if there’d been any news since we talked during the summer. It had been about a year and ten months since Adelaida died; the couple’s new daughter, Annabelle, was nearly 7 months old. Here’s what he said:

“The only news is that we continue to be head over heels in love with our daughter Annabelle, who is doing great. With that said, not a hour goes by that we don’t feel the loss of Adelaida. So I guess these things would qualify as no new news.”