When you do not have a SuperBaby

This is a must read.

“When I was pregnant, I tried to make a SuperBaby. I did not realize I was doing this. I believed I’d long ago shed the theory that a body could be made perfect. “

I know I play the must-read card more than once or twice a month, but I mean it. It perhaps hits me in ways it won’t hit others without similar experiences. But I think it will educate us all on those assumptions about value, about pain and suffering, that we don’t even know we have.

“After thirty-six hours of labor, the last five of which can best be described as an apocalypse at the very base of me, I pushed my baby out and into the warm waters of a hospital tub. My midwife dangled a slippery, bloody thing above me. Without my glasses my SuperBaby looked like a bean-shaped blur.

“What a little peanut!” the midwife cried. And that was the kindest thing any medical professional would say about my newborn’s body.”

As long term readers know, two of our grandchildren had traumatic births and NICU stays with much fear and anxiety. Their diagnoses were neither of them as dire as initially projected, but neither youngster is ever, I think, going to be precisely at a place where we don’t have secret worries about what the future holds for them. We wonder that for all of our loved ones, naturally, but with those two the questions have more of an edge, for different reasons.

I have also shared how stunned I was to realize that my biggest fear, the constant ache in my heart in the first hours was that *my* babies- adult women who loved their families and loved their own babies as much as I loved my own- be spared suffering. It was even more ironic because some of the suffering I wanted them spared is a life that their father and I actually *chose* when we adopted a child with multiple disabilities including quite severe cognitive delays. And I wouldn’t call what we ‘endure’ suffering. There are days it is extremely inconvenient and frustrating. There are times when I sit and sulk to myself over some limitations, or the fact for, the game of refusing to pull up her pants never gets old. There are, occasionally, worse days than that.  But I do not tolerate somebody else’s misplaced pity for this child.

The doctor told me to try to nurse my infant. I held her seven-pound body to my chest as she thrashed, eventually getting her mouth around my silicon-encased nipple. She latched, and I felt her limbs relax. She sucked. The doctor and nurses turned to the television. I felt the heat of my girl against my body, felt the slipperiness made from sweat between us. I did not see what the doctor and nurses saw, which was breast milk traveling safely down my daughter’s esophagus and not into her airway.

“Looks good!” the young doctor said cheerily.

As we drove through Cincinnati that day, I marveled at the people along the sidewalk, amazed at their ability to walk and swallow at the same time, to live and thrive and not die by way of their own spit.

Not choking on your own spit, making teeth with the full complement of calcium, learning to speak, walking, moving the tongue and teeth and lips together to chew, the muscles in the throat to swallow properly, these are miracles we all do every day.  The intricate, complex weaving together of bones, muscle, sinew, brain, and all those neurons and cells between and around, revolving, communicating, producing what the body needs, cleaning away what it doesn’t without us ever knowing a thing about it, these are causes for wonder- as are the hugs, kisses, and joys of a child whose body and brain are not communicating well, not growing ‘normally.’  But do we really believe that?  Really?

“This response to disability is so pronounced in our culture that Princeton ethicist Peter Singer can still keep his job when he argues that children born with disabilities can ethically be killed before a certain age. Even babies with hemophilia. Why? Because, he says, they suffer and cause suffering: [T]he total amount of happiness will be greater if the disabled infant is killed.


Whoever got the idea that we could have pleasure without pain? –Pema Chödrön, When Things Fall Apart”

Could Singer keep his job and not be ostracized from decent society if he said those things about  black, brown, or yellow babies? About babies with a gene, if such a thing existed, for gayness?  Would it seem worse to you if he did base those statements on race or sexual preference or identity rather than disability?

Is it always easy, being the parent of a child with a disability, especially a cognitive disability?  No, of course it is not.  It’s not always easy being the parent of a ‘normal’ child somebody will want to say, but that is its own kind of frustration, statements that mean to be kind but actually diminish, because it is not the same, not even close. It’s very different.  It’s not Holland when you meant to go to France different, either. It’s more of a ‘you meant to go to France, but the plane crashed but at least you all survived and now you have to figure out where you are and how to keep on surviving’ kind of difference.   Which is not to say it’s impossible and not worth it.

The plane crash there, by the way, is not the child, it is your plans that crashed, your hopes and dreams.  You will have to make different ones, and this is not always easy.

But it will be…. well.  Click through and read the link. It’s a must read.

Posted in parenting, Pro-life | 9 Responses

Of Manners and Culture

In Rudyard Kipling’s book Kim, there is an episode where Kim quickly talks his way out of some trouble through a series of creative fictions and taradiddles, and Kipling concludes his description by saying Kim could lie like an Oriental.  This is most disturbing to the modern ear.  There are other similar episodes, but I still think Kim is well worth reading.  Here’s my take on that little episode of cognitive disturbance (and others like it in the book), along with my take on cultural differences that come up in Kim which seem to connect with my real life.

If you are not familiar with the book, the orphaned and free spirited young Kim is of English parentage, but he has grown up on the streets of India.  In this book he travels through India as the assistant of an elderly monk, and as they travel and through their eyes, Kipling is describing the people, landscape, and culture as it would have been seen and understood by his intended audience- people, young and old, of the British Empire at its height. I think it’s important to keep this in mind. Reading Kim we do learn something of India’s landscape, something of India’s various people, religions, and culture, some words and terms- but all of these details are seen through the eyes of a proud member of the British Empire in the Victorian era, and described for others like himself. So what we are really learning is what the British of that time and period would have seen and thought. Probably. Most of them.

Were their thoughts accurate?  Were they merely stereotyped ideas about ‘orientals?’ or is something else also going on?

What Kipling takes for granted and then says about the ‘oriental mind’ is not how the Orientals saw themselves, and it is not necessarily accurate as we would define accuracy. It is one view, one picture painted at a particular time and place as seen by one man and his specific culture (that’s why ‘lie like an oriental’ was a cliché).   And, again, this is my own equally limited viewpoint, what he says about lying like an oriental- I see that as yes, prejudicial, but also a prejudice fed by a cultural clash and lack of understanding (on both sides).

My view is not much informed by India, where my exposure is largely having spent some time over a couple months with one Indian friend, and watching a few Bollywood videos and a documentary called Meet the Patels (in other words, laughably little).

But having lived in Japan and the Philippines, and based on conversations inside and outside the culture, with people who have experience in several Asian cultures, and some reading  here and much reading there about various eastern cultures, here are my jumbled thoughts.

When we lived in Japan and sometimes now, we do know the feeling that people are lying to us, or at least, not being straight with us sometimes. And it was and can be frustrating. But what we learned is in the majority of Asian cultures it is incredibly rude to give somebody a direct ‘no,’ and especially rude to tell a customer or an older person no.

So in Japan, when I would say, “Can we have a repair person come out to fix the washer on Friday,” and they would say, “Hmmm. I think that will be difficult,” my impulse was to fix it by asking, “Okay. What can we do to make it less difficult, because it needs to happen?” But “I think that will be difficult” actually meant NOPE. And they generally felt like it was obvious to anybody that they meant no- because it was quite obviously a direct no to their fellows, and me pushing them to be more direct was incredibly rude and obnoxious and unacceptable.  They were frustrated.  And I was, too, because I felt like “Why can’t these people just be straight with me?!” And they felt like, “Why is she being so rude to me? Is she trying to get me fired?!”

And you can study and learn about these things, but certain things are so deeply ingrained in you that it’s really, really hard to break past them and act on them, and really believe in your heart of hearts that the other person’s method is just as reasonable as yours, or even that they really, truly believe that their very different way of doing things is right, when obviously, your very normal way of doing things is the correct way.

We had another incident where several young men had come to help us move and had been promised their transportation fare if they did.  When it came time to pay their transportation fare, we did the math incorrectly and also underestimated how many different forms of transportation they had to take to get here, and we initially gave them far, far less than they should have gotten.   We asked first how much we owed them, and weren’t given a direct answer.  We gave them our poor estimate and asked if it was enough, and they said yes.  Only, I happened to notice one in the back say yes, of course it was enough, and *then* look down and count it and there seemed to be something in his eyes, a sick disappointment, almost, that indicated to me it was not nearly enough.

We told them, “We’re dumb Americans and we are still figuring out the math, the conversion rates. We do not take Jeepneys because we don’t understand the routes, so we don’t even know what one ride would cost.  Please tell us if we are wrong.  We don’t want to make a mistake.”  They were embarrassed, and insisted it was fine but I was sure by then that it wasn’t.

We started asking more specifically, how many jeepney rides did you take? Did you need a bike, too?” and finally we looked at the one adult in the room (the others were teens), and asked him how much he spent to come to us.  He has more experience with westerners and I think perhaps was letting the young people figure things out on their own, but for whatever reason, we finally we got a better number which we added to what we had already given them, and we told them again, “It’s okay to tell us when we are wrong.  We don’t mind.” And they smiled weakly and said again, that it was fine.

But it’s not okay for them to tell us we are wrong.  It’s not okay with them.

If you are American you probably feel the same thing- at some unspoken, unthought-out level there is this sense, this feeling from deep, deep down, they would all be happier if they could just be more direct and straightforward.

But it’s far more likely they will writhe in excrutiating embarrassment and blush and feel awful,  and avoid future contact with us so as not to be in that position again.  Very likely we caused major cognitive dissonance and discomfort, because not only is it rude to tell somebody no, you’re wrong,  this culture really  respects its elders, and as a grandmother in my fifties, I am one.  Therefore, doing as we asked and being more direct would not have been at all comfortable for them, because they were not brought up to value being direct and straightforward.  What we call ‘straightforward’  they might most tactfully call rude or blunt.  That is not admirable at all. It wouldn’t be a relief to them, it would be miserable.  They were brought up to believe that consideration, and respect, and gently sort of deflecting a question rather than a direct no were admirable, and to be precise about the money we should give them is horribly, unspeakably rude.

If it is still hard to imagine, think of it this way.  Imagine you meet somebody from a culture where it is the height of civility and respect to signal that the answer to a question is ‘no’ by holding up your middle finger in the other person’s face, and instead of saying yes, you stick out your tongue and waggle it.  Now imagine chatting with a grandmother from this culture who is asking you questions about what you like and don’t like, would you like some water, do you want some sliced snake in your tea, have you traveled much, and she tells you repeatedly, “It’s okay.  This is my culture, and I do not mind. Please hold up your middle finger or stick out your tongue to say ‘no’ or ‘yes.’ ”

Even if you could bring yourself to do it, you’d hate it. You’d feel vulgar and crude and rude. You probably couldn’t do it without giggling self-consciously at best. You’d extricate yourself as soon as possible and in the meantime you’d do almost anything to avoid saying ‘no’ because you cannot sit their and flip off a grandmother to her face.

That’s a rather crude example.  Cultural distinctions are generally not quite so straightforward as that. They are more complicated, and so more difficult to navigate and understand.

So, we return to Kim- you’re a Victorian from England brought up in the more straightforward style of the west, and you go to a subjugated nation where you are in charge basically by ‘right’ of conquer – a person of some authority, and you go around asking your servants, employees, and tradespeople direct questions and will not be fobbed off by indirect answers, so you force them to say yes, even though they can’t do what you asked- because they can either be unspeakably rude or tell you want to hear. So they choose tell you want to hear- or what they think you want to hear. Because they cannot be unspeakably rude, this is ingrained from birth.


(I was told it was quite rude not to slurp your noodles very noisily in Japan. I knew that. I believed it. But do you know how nearly impossible it was to make myself noisily slurp a noodle soup? It’s hard to violate the cultural taboos which are taught to you from infancy, and I never could bring myself to do it without feeling self conscious about it).

In Kim, not only is there a clash of cultures, in most cases the author doesn’t really fully understand it is a cultural clash, and then there is another layer to separate, and I am not sure we can at this distance.
In addition to the confusion caused by a culture which values direct, straightforward answers meeting a culture which values courteous and considerate indirect answers, followed by an insincere agreement when badgered into it…. well, it’s more like a desperate kind of courtesy. To those untutored Western ears, I can see why it would have sounded like Orientals always lie, and do it easily.

But in addition, I feel like in the contact between Britannia and India,  probably you have the whole subjugated nation thing going on, where the oppressed rarely feel like they owe their oppressors the truth, it’s part of resisting subjugation to mislead.

My conclusions is that Kim is genuinely a 3rd culture kid, and he’s completely comfortable with the cultural values and practices of his adopted homeland or his parents’ homeland and can change to suit either, and while Kipling doesn’t really understand the *reason* for the differences, he has the talented writer’s eye for seeing them, even if he gives the wrong explanation.

And were I as gifted a writer as Kipling so that my little blogpost were disseminated far and wide and read for decades, very likely somebody else would have a more accurate understanding and explanation.  Very likely somebody does, whether my little ideas are disseminated or not. IT’s just that, not being as widely read as Kipling, I can do less damage if I am wrong and less good if I am right and not being as talented, offer far less entertainment and food for mental reflection.




Listening to Customs of the World: Using Cultural Intelligence to Adapt, Wherever You Are

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News Links

Struggle sessions, self criticism, and ‘Unlearning workshops.’  Because re-education is so old-fashioned.


Everything is just lovely in Sweden: Sweden will ‘never go back’ to the days of mass immigration after failed asylum seeker launched Friday’s truck attack in Stockholm, says the country’s shell-shocked PM

Read more: http://www.dailymail.co.uk/news/article-4396224/Sweden-never-mass-immigration-PM-says.html#ixzz4dqtNVHNA
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School shooting in San Bernadino, angry estranged husband went to his wife’s special ed classroom and killed her and himself, and badly wounded two students (I’ve read that one of the students also died, but I’ve also read the child is in critical condition, and I’m not sure which is the most accurate)

Former Obama official admits they ‘always knew’ they had not really gotten Assad to get rid of all chemical weapons, although they announced it differently to the American public.

Military build up at the China, North Korea border, and US Navy is headed that direction as well.

Migrants from West AFrica openly sold as slaves on the open market in Libya

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Re-accomodate is the newest buzzword

United badly overbooked their flight, as per usual. Then they needed four seats for their own staff (not sure how that works, don’t staff have their own seating?) and they had already allowed everybody to board and be seated.
They asked for volunteers to leave for 400 dollars and an overnight stay in a hotel. No takers. They offered 800. I think they had 2 takers, and then instead of offering more, they randomly chose two more tributes, I mean ‘volunteers’ by computer.

A man who was chosen to ‘volunteer’ said he is a doctor who has patients he needs to see tomorrow, so he refused to get up. United called in Chicago cops who forcibly dragged him, while screaming, up out of the window seat and over another seat, bloodied his lip in the process, and then dragged him off the plane by his arms, like the cops were neanderthols and he was a victim. What do I mean, ‘like?’ They dragged him like he was a thing, not a person. His shirt was up over his chest exposing his belly. This is a person who looks to be in his forties or a bit older (he may only look older because of what he’s been through). It was cruel and undignified.

He got away and came back on the plane and said he wanted to go home (he was dazed by this time, seems to have been hit in the head at some point). At this point, other passengers stood up and said they were leaving. United then cleared everybody to ‘clean up.’ I.e. get rid of evidence and blood (that’s my take).
Icing on the cake- CEO has apologized for ‘reaccomodating’ the passenger.

This is the face of the man who will be reaccomodating United’s profit margins and probably contributing toward the ‘reaccomodation’ of a few United employees.

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Bug- if you’re squeamish about bugs don’t look.

I found this wandering down the same road I was on as I was on my way home from language lessons. It glittered under the glow of a streetlamp.


Tessaratomidae family, or shield bugs because they are shaped like shields. It’s a large family with members all over the world.  Stink bugs and harlequin bugs are members.


It is a shield bug, Mattiphus reflexus. It’s about an inch, I magnified it for most of these photos.

Shield bugs include four different families- some others are on this page.



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