Brigit Pegeen Kelley
It was not a scorpion I asked for, I asked for a fish, but
maybe God misheard my request, maybe God thought
I said not “some sort of fish,” but a “scorpion fish,” a
request he would surely have granted, being a goodly
God, but then he forgot the “fish” attached to the
“scorpion” (because God, too, forgets, everything
forgets); so instead of an edible fish, any small fish,
sweet or sour, or even the grotesque buffoonery of the
striped scorpion fish, crowned with spines and
followed by many tails, a veritable sideshow of a fish;
instead of these, I was given an insect, a peculiar
prehistoric creature, part lobster, part spider, part
bell-ringer, part son of a fallen star, something like a
disfigured armored dog, not a thing you can eat, or
even take on a meaningful walk, so ugly is it, so stiffly
does it step, as if on ice, freezing again and again in
mid-air like a listening ear, and then scuttling
backwards or leaping madly forward, its deadly tail
doing a St. Vitus jig. God gave me a scorpion, a
venomous creature, to be sure, a bug with the bite of
Cleopatra’s asp, but not, as I soon found out, despite
the dark gossip, a lover of violence or a hater of men.
In truth, it is shy, the scorpion, a creature with eight
eyes and almost no sight, who shuns the daylight, and
is driven mad by fire, who favors the lonely spot, and
feeds on nothing much, and only throws out its poison
barb when backed against a wall — a thing like me,
but not the thing I asked for, a thing, by accident or
design, I am now attached to. And so I draw the
curtains, and so I lay out strange dishes, and so I step
softly, and so I do not speak, and only twice, in many
years, have I been stung, both times because,
unthinking, I let in the terrible light. And sometimes
now, when I watch the scorpion sleep, I see how fine he
is, how rare, this creature called Lung Book or Mortal
Book because of his strange organs of breath. His
lungs are holes in his body, which open and close. And
inside the holes are stiffened membranes, arranged
like the pages of a book — imagine that! And when the
holes open, the pages rise up and unfold, and the blood
that circles through them touches the air, and by this
bath of air the blood is made pure … He is a house of
books, my shy scorpion, carrying in his belly all the
perishable manuscripts — a little mirror of the library
at Alexandria, which burned.
Instead of having yet another day of awareness, I’d like to make World Down Syndrome Day one of remembrance and action. Several things have weighed on me in the last little while. The first is a doll, made by a mother of a 13 year old girl with Down syndrome. They are called "Dolls for Downs" [spelled incorrectly]. The idea here is that “every child wants a doll that looks like themselves.” I don’t agree and furthermore, I am uncomfortable with these dolls in principle.
Firstly, I dislike anything that has the potential to perpetuate the stereotype that all people with Down syndrome look the same. They don’t. My son looks like the rest of my kids; an amalgam of mine and my husband’s family. He does not look like these dolls any more than any other child with DS that I know personally. I find the description of “pudgy features” in the video to be extremely offensive.
Additionally, like the bald barbie debate for pediatric cancer patients, I’m going to take the stance that my son does not need this doll. He does not need another feel good, “isn’t that cute!”, soft focus awareness campaign (which is what this doll will surely turn into). He needs a medical profession who gives a damn. He needs a society that is tolerant and accepting of neurodiversity. He needs an education system that will not decide his future based on bureaucracy and preconceived notions. He does not need a doll whose proceeds line a private pocket, like most “awareness” paraphernalia does.
While I’m on the subject, people with Down syndrome are often under-treated and marginalized by the medical community. Don’t believe me? The Special Olympics has the largest database of people with Intellectual Disability/Developmental Delay that there is and as it turns out, most of the athletes are lacking medical treatment of some description. According to the Special Olympics, 70% of athletes are overweight, 35% require vision care/new glasses, 30% have severe hearing impairment and 24% have untreated dental decay, just to name a few things.
I also cannot tell you how many stories I have heard of physicians and other medical staff dismissing a mother’s concerns or simply shrugging something off as “it’s to be expected”. There is the assumption too, that a person with DS is somehow a lesser human being and therefore not worthy of care (that would be, presumably, better spent on a “normal” person). We need to stop denying surgeries and life enriching treatments to people with developmental delays. We need to stop expecting the worst and completely disregarding people when we hear “Intellectual Disability” or “Developmental Delay”. We need to stop walking in with preconceptions and make accommodations on a person to person basis. It’s not that hard, really. However, I might as well be speaking ancient Greek to most people to whom I bring this up, as outdated, paternalistic practices run deep within medicine, our education systems and in the general public.
Make World Down Syndrome Day a Day of Action (via Sara Hendren)
Stories about violence are not the only stories that involve mental illness. In a recent article for Pacific Standard, “A Toast Story,” John Gravois traced a recent trend of high-end toast to a woman named Giulietta Carrelli’s coffee shop. It emerges that Carrelli’s toast and shop are some of the many ways she manages her schizoaffective disorder, a condition which for most of her life went undiagnosed and untreated. And though she is currently receiving treatment, Carrelli’s main anchor to stability even in dark times is her work and food and the community of friends that she has built over the years.
I doubt Carrelli owns a gun, but she would, of course, be classified as dangerous by the New York Times. Unmedicated for much of her life, she would fit neatly into the anecdotes that comprise “When the Right to Bear Arms Includes the Mentally Ill.” But Carrelli is not especially dangerous. Instead, she is somebody who has succeeded, despite real challenges, in finding a stable place to stand. What we should take from her story is how much can be accomplished when a struggling person receives even a little bit of help from another human being.
I have plenty of fears for the mentally ill. None of them involve guns. I fear for them when they struggle to navigate a labyrinthine medical system and fight for the care they need. I fear for them when they struggle to find a helpful psychologist or therapist that they can also afford. I fear for them because they are much more likely to be the victims of a violent crime. But I feel especially afraid for them every time the media latches onto a faulty narrative and makes their world a little less safe.
[Murakami] postponed his university studies to open a jazz club in suburban Tokyo, naming it Peter Cat, after one of his pets. In 1977, he and his wife, Yoko, moved the club to Tokyo’s central Sendagaya neighborhood, where he wrote his first two novels, which led to later books whose titles referenced doo-wop like the Dells’ “Dance Dance Dance” and jazz tunes like Fuller’s “Five Spot After Dark.” The music equally influenced his writing style, which he sometimes conceived in terms of jazz rhythm, improvisation, and performance.
While I was planning my first trip to Japan, I decided to visit the site of the club, which closed in 1981. […] Unfortunately, no one seemed to know the club’s address — not Murakami’s translator, Jay Rubin, nor the fan who runs Haruki Murakami Stuff. After comparing Google’s map of central Tokyo with a satellite shot from a Japanese website, I switched to street view and scanned block by block, searching for the corner building depicted in a photo I’d seen on the blog A Geek in Japan and checking off intersections on a hand-drawn map as I went. Finally, there it was: a drab three-story cement building. Outside, a first-floor, a restaurant had set up a sampuru display of plastic foods. Above it, an orange banner advertised dining cafe.
If you like mysteries or Murakami, you should read the whole article. (That means you, Kate.)
It is well-known that Beckett was supportive of a group of prisoners in the German jail of Lüttringhausen who put on a production of Waiting for Godot in 1954, and that he kept in touch with the convict who masterminded it, whom the editors identify as Karl-Franz Lembke. They print an extraordinarily emotional letter from Beckett to Lembke in October 1954:
My dear Prisoner
I read and re-read your letter.
Godot is from 48 or 49, I can’t remember. My last work is from 50. Since then, nothing. That tells you how long I have been without words. I have never regretted it so much as now, when I need them for you.
For a long time now, more or less aware of this extraordinary Lüttringhausen affair, I’ve thought often of the man who, in his cage, read, translated, put on my play. In all my life as man and writer, nothing like this has ever happened to me. To someone moved as I am, phrases come easily, but from a sloppy way of talking, not at all your style, given that I am no longer the same, and will never again be able to be the same, after what you have done, all of you. In the place where I have always found myself, where I will always find myself, turning round and round, falling over, getting up again, it is no longer wholly dark nor wholly silent.
That you should have brought me such comfort is all that I can offer you as comfort. I, who am what is called free to come and go, to gorge myself, to make love, I shall not be fatuous enough to dispense to you words of wisdom. To whatever my play may have brought you, I can add this only: the huge gift you have made me by accepting it.
Two years later Lembke, now released, was trying to put on a production of the play in Frankfurt, and letters to his German publisher show Beckett arranging permissions, sending money to help with the production, and suggesting Lembke as a translator for “a few easy poems.” But a footnote drily adds that these arrangements ended abruptly when it was discovered that Lembke had embezzled the funds of his acting company and absconded; and Cronin’s biography tells of an alarming visit by Lembke to Paris, where he moved in to Blin’s apartment and was kept strictly away from the Rue des Favorites. The story might make a play in itself, from a different kind of playwright.
There are bare winter days when the sea is kin
to mountain country, crouching in grey plumage,
a brief minute blue, long hours with waves like pale
lynxes vainly seeking hold in the beach gravel.
On such a day wrecks might come from the sea searching
for their owners, settling in the town’s din, and drowned
crews blow landward, thinner than pipe smoke.
(The real lynxes are in the north, with sharpened claws
and dreaming eyes. In the north, where day
lives in a mine both day and night.
Where the sole survivor may sit
at the borealis stove and listen
to the music of those frozen to death.)
But I think there are limits to how safe a progressive society can be when its conception of the individual seems to be shrinking and shrinking. It’s very hard to respect the rights of someone you do not respect. I think that we have almost taught ourselves to have a cynical view of other people. So much of the scientism that I complain about is this reductionist notion that people are really very small and simple. That their motives, if you were truly aware of them, would not bring them any credit. That’s so ugly. And so inimical to the best of everything we’ve tried to do as a civilization and so consistent with the worst of everything we’ve ever done as a civilization.
[…] To the extent that conservatives still defend the drug war (and there are fewer and fewer willing to do so), this is usually the way they go about it. Their argument is that drug use enslaves drug users with addiction, and that were drugs to be made legal, we’d all be robbed of the benefits of living in a populace of responsible citizens. Use and addiction would be common, thus shredding the moral fabric (or some other vague metaphor) that binds us all together. These arguments have been rehashed again since the legalization of marijuana in Colorado and Washington. (See also Davids Brooks and Frum.)
I think there’s good evidence that this is wrong on its face. Jacob Sullum’s book Saying Yes: In Defense of Drug Use, for example, presents compelling empirical evidence that the vast, vast majority of people who use drugs—even hard drugs—do so recreationally, don’t become addicts, and inflict little to no harm on those around them. But even if we accept the argument that legalization could lead to widespread use, significantly more addiction, and whatever itinerant harm comes with both, these arguments almost always fail to acknowledge the catastrophic harm inflicted by drug prohibition itself. If we’re truly concerned about policies that “degrade human nature,” “damage and undermine families,” and “deprive the nation of competent, self-governing citizens,” it seems like we should consider not only the effects of illicit drugs themselves, but also the effects of prohibiting them.