Some thoughts on suffering, “cures,” and ethics

Scott Alexander, a psychiatrist who has worked extensively with people with autism argues that yes, we do need a cure for autism:

Would something be lost if autism were banished from the world? Probably. Autistic people have a unique way of looking at things that lets them solve problems differently from everyone else, and we all benefit from that insight. On the other hand, everyone always gives the same example of this: Temple Grandin. Temple Grandin is pretty great. But I am not sure that her existence alone justifies all of the institutionalizations and seizures and head-banging and everything else.

Imagine if a demon offered civilization the following deal: “One in every hundred of your children will be born different. They will feel ordinary sensations as exquisite tortures. Many will never learn to speak; most will never work or have friends or live independently. More than half will consider suicide. Forty percent will be institutionalized, then ceaselessly tyrannized and abused until they die. In exchange, your slaughterhouses will be significantly more efficient.”

I feel like Screwtape would facepalm, then force him into remedial Not-Sounding-Like-An-Obvious-Demon classes.

I didn’t know that there was a movement against cures for autism, but Alexander objects to the notion that people with autism who spend much of their time banging their heads against walls or trying to chew off their limbs are that way because they’ve been treated badly. He argues, reasonably, that (1) some children with autism are that bad off at home with parents who love them and are doing their best, and (2) this society isn’t going to come up with fantastically functional institutions any time soon (see: nursing homes). His best point, the one I want to focus on, is this:

Let’s taboo whether something is a “disease” or not. Let’s talk about suffering.

Dropping the binary distinction that assigns various people various mental diseases or disorders would seem to me to be a step forward in our thinking about how the mind works, at least in many cases — I’m thinking of depression, for example. And I agree that it is far better to approach people by considering whether they are suffering than by assigning them an identity.

Autistic people suffer. They suffer because of their sensory sensitivities. They suffer because of self-injury. They suffer because they’re in institutions that restrain them or abuse them or just don’t let them have mp3 players. Even if none of those things happened at all, they would still suffer because of epilepsy and cerebral palsy and tuberous sclerosis. A worryingly high percent of the autistic people I encounter tend to be screaming, beating their heads against things, attacking nurses, or chewing off their own body parts. Once you’re trying to chew off your own body parts, I feel like the question “But is it really a disease or not?” sort of loses its oomph.

Here’s the problem, though: If you want to talk about a “cure,” then it seems to me you had better be talking about a disease.

Technological change and the hard work of parenting

Alison Gopnik reports in the Wall Street Journal: “Two large-scale surveys done in 2007 and 2013 in the Netherlands and Bermuda, involving thousands of adolescents, found that teenagers who engaged in more online communication also reported more and better friendships.”

That’s a heartening correlation to anyone who doesn’t want to have to worry about the consequences their kids’ technology use, but it isn’t causality. It should not be surprising that people who have more and closer friendships would communicate with those friends by whatever means their society and economy provides, and that “more online communication” would thus correlate with “more and better friendships.” I do wonder what, exactly, “more and better friendships means”; in particular I wonder if the researchers’ construction of that idea ultimately collapses into a definition of extraversion, but I’m not interested enough to dig up the original article. I’m more interested in Gopnik’s use of the study, which is to dismiss the worries of parents (or of anyone else) as mere nostalgia.

We walked for miles to see him

I read this poem, or rather story in the form of a poem, in lieu of preaching a sermon on John 6:1–15 at St. Joseph’s Episcopal Church on July 26. I had no great words of wisdom to offer about the story of the loaves and fishes, and, in any case, I’m a writer, not a preacher.

We walked for miles to see him, this brand-new prophet,
packed a picnic in the dark before dawn:
bread, a little stale; some cheese, a skin of wine,
more than we needed. My wife overpacks.
On my back I bore this feast, beyond
the town, the stubbly fields, into the desert—
the wilderness, she driving me before her
like a damned goat to die. We lived, of course,
but that was later. Meantime the sun shone hot
and hotter as it climbed, as we climbed
one hill after another, to see another valley
void of life and full of rocks, the few
bare bushes brown, and worse than none.
The sky became a vast and cloudless fire
that washed the world to white. We kept our eyes
down on the ground. A lonesome vulture fed
on carrion—though what could have lived here
long enough to die, I could not guess. Perhaps
another prophet, less successful. This one—
This one they all talk about, the one
the fishmonger says is Lord. I’ve heard it before.
My wife, my neighbor, the fishmonger say to me:
You have to hear him preach! But all I could think,
trudging over hill and sun-baked vale:
If this guy is Lord, someone forgot
to prepare his way.

The Lord is not a shepherd

A sermon preached at St. Joseph’s Episcopal Church in Durham, N.C., on April 26, 2015.

John 10:11-18
Psalm 23

I was determined that I was not going to stand up here and talk about sheep, but in thinking about today’s readings I kept being pulled back to the image of them—the shepherd, the flock, the pasture, the sheep. I have to admit I’m just not crazy about that image. It isn’t that I don’t like sheep. I do like sheep. I’ve toyed with the idea of having sheep some day. They’re relatively easy to manage, and they’re good for multiple purposes throughout their life cycles: they give wool, they give meat, some breeds even give milk. They can live off of relatively poor land. They can be integrated fairly easily into a multi-purpose farm and a household economy. And lambing season, if you don’t mind being kept up at night, is a glorious thing. Wendell Berry, one of a dwindling number of literal “good shepherds” the western world has left in this age of industrialized agriculture who also gives us his own eloquent descriptions of the experience, has this to say about keeping sheep:

The old shepherd comes to another
lambing time, and he gives thanks.
He has longed ever more strongly
as the weeks and months went by
for the new lives the ewes have carried
in their bellies through the winter cold.
Now in the gray mornings of barely
spring he goes to see at last
what the night has revealed. 1

Berry is a Christian, which I think shows through pretty clearly in his poetry—not that he is actively trying to convert anyone, but that he never strays very far from the image of rebirth. The care he takes for his sheep is the sort of care we’d want from our own Good Shepherd, but Berry’s is a very human shepherd—a humble one, who “gives thanks” for a lambing time that he, far from controlling in the manner of an industrial foreman or a software engineer, takes as a holy mystery.

  1. Wendell Berry, “VI” (2011), This Day: Collected and New Sabbath Poems (Counterpoint, 2013), p.365. ↵

Losing our language

This news has been wending its way through the blogosphere for a few months now, with predictable hand-wringing and defense, but Robert MacFarlane reports in Orion that the new edition of the Oxford Junior Dictionary replaces a number of words from nature with terms for technology.

Under pressure, Oxford University Press revealed a list of the entries it no longer felt to be relevant to a modern-day childhood. The deletions included acorn, adder, ash, beech, bluebell, buttercup, catkin, conker, cowslip, cygnet, dandelion, fern, hazel, heather, heron, ivy, kingfisher, lark, mistletoe, nectar, newt, otter, pasture, and willow. The words introduced to the new edition included attachment, block-graph, blog, broadband, bullet-point, celebrity, chatroom, committee, cut-and-paste, MP3 player, and voice-mail.

Oxford clearly thought the technical terms more relevant to children’s lives than those they replaced, and that, sadly, is probably true. MacFarlane observes, correctly, that “The substitutions made in the dictionary—the outdoor and the natural being displaced by the indoor and the virtual—are a small but significant symptom of the simulated life we increasingly live.” But it’s his notes about the colorful variety of traditional terms for natural phenomena in the British Isles that intrigue me:

Consider ammil, a Devon term meaning “the sparkle of morning sunlight through hoar-frost,” a beautifully exact word for a fugitive phenomenon I have several times seen but never before been able to name. Shetlandic has a word, pirr, meaning “a light breath of wind, such as will make a cat’s paw on the water”; and another, klett, for “a low-lying earth-fast rock on the seashore.” On Exmoor, zwer is the onomatopoeic term for the sound made by a covey of partridges taking flight. Smeuse is a Sussex dialect noun for “the gap in the base of a hedge made by the regular passage of a small animal”; now that I know the word smeuse, I will notice these signs of creaturely movement more often.

What’s wonderful about these words is not only that they’re colorful and descriptive but that they arose from folk usage. They’re highly local; they’re rooted in a particular place and culture. The terms Oxford removed from its children’s dictionary didn’t display that color or variety, nor were they local in origin — but note how many of the new ones were imposed from above. They tell you what to do (attachment, cut-and-paste), they serve as advertising for services (broadband), they use inscrutable abbreviations (MP3 player), or they just feel forceful (bullet-point). The nearest to a folk term is blog, which seems like a common-sense contraction of web log, but it’s hard to separate the early common, bottom-up use of the term from the popularity it gained when the Blogger platform was released. Even those technology terms that begin in common, informal usage are almost immediately co-opted by one or more businesses for marketing. They don’t spread because they’re useful as much as because that’s what we’re told to call things, by someone with something to sell us.

The changes in the Oxford Junior Dictionary show us just how much power we’ve lost over our language — and therefore over our communication and, indeed, our own thoughts. Of course, the fact that people are buying and selling dictionaries in the first place tells us pretty much the same thing. Just not as vividly.

Life and death (and soup) in the city

Originally published by New American Homesteader in 2015.

Under a bright December sky we gathered to kill the St. Elizabeth House chickens. My friends who built the coop and tended the chickens had moved to Georgia for a new job, and the chickens had mostly quit laying. Now the aging hens strutted and preened one last time in the weak solstice sun, oblivious to their fate.

“Why can’t they just keep feeding the chickens?” my daughter wanted to know.

Because, baby, nobody here can afford pet chickens. It is a house by and for those living on the margins, where the doors are open for community dinners and a room is reserved for someone with nowhere else to sleep. For two years the chickens fed our friends with their eggs, and in return received clean grain and warm grass and a well-built coop. But the humans come first, so now they’ll have to be soup. Better that than to be a racoon’s lunch. My daughter nodded: Her chickens met that fate last fall. She saw the carnage.

So our farmer friend Jamie offered to help slaughter and dress the birds, and I volunteered because—why? I was happy to help. I’d done this before and I have good knives. It was a beautiful day and I enjoyed the company. And something more. Years ago, I needed to prove to myself that I could kill an animal, feeling that if I were going to eat them, I ought to accept my responsibility in the matter. I made my peace with meat. But it’s good to be reminded the cost.

Listening with the ears of God

A sermon preached at St. Joseph’s Episcopal Church in Durham, N.C., on October 5, 2014.

Matthew 21:33–46

One afternoon last week I spent a little time at the Durham Arts Council, walking through the galleries, looking at the exhibitions of work by local artists. The great thing about the Arts Council galleries is that I never know what I’m going to get. It’s completely unpredictable. It could be photography or landscape painting, but it could be abstract sculpture or “fiber architecture” or (as it once was) hats. And it’s all completely new. There’s nothing familiar about any of it — no artist whose biography I recall from some class I took back in the late twentieth century, no named period whose history I can mentally outline. I don’t have any easy context for the art, no prefab intellectual framework into which I can place it. I’m always surprised. And so I just have to stand there awhile and… look at it.

Unless… I make the mistake of reading the artists’ statements. For those of you who don’t frequent art galleries, an artist’s statement is what an artist writes to explain and to justify his or her work, generally as a requirement for getting a grant or arranging a show. They have a reputation for being pretentious, and that’s not entirely undeserved. Ideally they function as a kind of introduction to the art, making it more easily accessible — but in a way, that might be worse. Because if you read it, then suddenly, without any effort at all, you know what the art is supposed to be about. You’re absolved of the necessity of looking at the art, and this fascinating mystery the artist has created for you has been turned instead into a mere puzzle — to which you, now, have the solution!

And for me… The entire experience of looking at the art has been spoiled.

It isn’t that I don’t care what the artist had in mind… It’s rather that I’m inclined to think that whatever I gain from simply being with the art, from truly looking for a little while, even if I walk away with no understanding I could articulate to anyone, outweighs any answers I might be given for free, and that the possibility of that experience vanishes the moment I turn the mystery of a work of art into a puzzle and start looking for solutions.

If you’re wondering why I’m taking this opportunity to confess my antipathy toward artists’ statements, bear with me.

You see, I find myself drawn to the very first thing Jesus said in today’s Gospel reading: “Listen to another parable.” That’s all. It doesn’t seem like much. But as far as I can tell, nobody in the story actually does listen — either in Matthew’s story or in the parable itself! In the parable, of course, the landowner sends servants to collect fruit from his tenants, and then he sends his own son, and every time the tenants pretty much literally shoot the messenger. (Or, well, stone him, anyway.) Not much listening going on there. The Pharisees to whom Jesus is speaking, meanwhile, seem intent mainly on figuring out who he’s pointing his finger at. When they “perceive that he was speaking about them,” as Matthew says, they decide to have him arrested — though not immediately, because the crowd, having just seen Jesus ride into Jerusalem on a donkey is too busy shouting Hosanna and proclaiming him king to listen long enough to know just what sort of king they’re welcoming. Nobody’s just listening. Everybody, on both levels of the story, is trying to figure out what this guy’s angle is. What are you up to? What do you want from me? or— What’s in it for me?

Travel in the magic city

Since I moved, it has slowly dawned on me that I can get practically everywhere faster by taking the freeway. But it has at the same time dawned on me that I might be eroding other, existing neighborhoods by using that freeway—not directly, not by physical or economic means, but simply by changing my perception of them.

Rituals of embodiment

It isn’t that I want effortless obedience from physical objects but because I believe there is value in the physical interaction itself: we are embodied beings, and we think not only with our minds or brains but with our hands and our whole bodies.

27. The transformation of rains

Spring, and warmth, and the sun shone for days with bewitching clarity. Trees offered tender leaves like babies’ palms. Flowers unfurled their love to bumblebees. And clouds of pollen covered all and every thing, infinite infinitesimal golden grains like so many sins choking the earth’s promise. Now the rain that fell last month as desperate cold has come again in peace to washed away the amber stain, and the wet green resonates in the crackling air. The spring transforms the rains, and the rain transforms the season.