Parenting, No. 785

I went to visit Henry this afternoon at his new job. He's a server at a funky little place in Venice. Maybe I shouldn't use the word funky anymore since very recently, like yesterday, Oliver told me that it was embarrassing. Maybe he didn't use the word embarrassing, but he repeated the word funky in a voice that I guess is mine, at least the voice that both sons use when they imitate me, and while I imagine there's fondness in the teasing, it still takes me by surprise that I'm considered painfully uncool and old. Both brothers have jobs this summer (Oliver actually works nearly full-time all year round, recently opened a Charles Schwab trading account and has bought stocks -- no joke), and I'm very proud of them. It's been a long time since I've included them on the old blog, and just now I was looking for past posts in a kind of nostalgic way, and boy -- some of those posts were damn funny. I sat down at the bar of this little restaurant where Henry works, next to a younger woman who was drinking a glass of wine and eating a salad. Since I'm the chattiest person on the planet and the proudest, most embarrassing mother, I introduced myself to the woman and told her that Henry was my son. She told me that she had a four year old son, and that he was in a challenging stage. I told her that I remember well those challenging stages, but I found those times to be more physically challenging and the teenaged and young adult years more emotionally challenging. I didn't tell her this story, but Reader, I 'll tell you. Just the other night, we were sitting at the table eating dinner -- takeout Vietnamese because making dinner in the summer is just not my thing -- and the usual conversation between The Brothers began, and this entailed arguing about whether LeBron James or Michael Jordan was the greatest basketball player of all time and then something about the baseball player Mike Trout and Teslas and Elon Musk and then you're an idiot and you're an asshole and you don't know what you're talking about, and just when I was wishing that one day we would have a conversation about -- let's say -- the greatest living poet or how much better a film-maker Fellini is than Tarantino, Sophie had a large seizure that I just know was a result of the anger in the air and maybe even how boring her brothers' arguments can be (Sophie and I are the same about these things, I am certain, but she seizes instead of dying a little inside at the general clusterfuckery). I probably said as much, because now that they're 17 and nearly 20, I don't bite my tongue as often as I might have when they were younger. Enough is enough.

But here's the thing. Those boys jumped up and into action helping me to help Sophie, and I realized that I am, perhaps, the luckiest mother in the world.

Low Country Questions

When we were children, my sister and I would ask one another the impossible question: If you had to, who would you kill? Mom or Dad? Neither! we'd scream, Neither!

If someone asked you whether you'd kill a terrorist who threatened your children (popped an olive in his mouth, an unsalted nut), what would you say (as you pull the plump mussel out of the lemon broth)? If  you toss and turn in bed all night, will those precious hours after sunrise seem heavy or deep and restful? Is the pen really mightier than the sword? Is your child's life worth more than mine? Is that child's life worth more than that one's? Or that one's? Would you send others to do your killing or would you hold them back and do it yourself?

Is Gubbinal about imagination and illusion or is there a world at all external to it?

That strange flower, the sun,
Is just what you say,
Have it your way.

The world is ugly
The people are sad.

That tuft of animal feathers.
That animal eye
Is just what you say.

That savage of fire.
That seed.
Have it your way.

The world is ugly.
The people are sad. 

Wallace Stevens

Here's a big old door, some shit and a fly

Dutch art nouveau drawing, 1901

I've been making comments over at Huffpost in response to a recent article about the child who was denied a kidney transplant based on "mental retardation." You can read more about that here on my blog, but I won't post a link to the Huffpost chain because it's so maddening, and I don't feel like going over there and getting any more involved.

What I do want to show you, though, is one person's reply to one of my comments.

Her comment:

Assuming the family can cover the costs and are a match, yes they should be allowed to donate to their daughter, although I'm not convinced that it would be in her best interest as far as quality of life and being able to understand what and why the procedure is being done to her.  It's possible she may be put through more suffering, not less by being given a transplant

­.
As far as the broader discussion about rules relating to transplant recipient registries

­, I couldn't agree with you more.  It's not first come, first serve; in a world with a shortage of organs, comparativ
­e health and quality of life must be taken into considerat­ion, and that does include mental capacity.  One of my very dear friends lost her 13-year-ol­d daughter, while she was awaiting a double lung transplant.  Frankly, I would be heartbroke­n if I were to learn that lungs Jena could have received were given to someone with significan­tly less of an ability to live life or with a degenerati­ve condition like this.
My response (because I'm like a fly drawn to shit):

Your comments are exactly the reason why families with children with special healthcare needs often despair and grow angry. I would urge you to read some of the material written by those who do have children with disabiliti

­es and by adults who are disabled. You need to educate yourself about issues like "quality of life" and "an ability to live life" before you make such statements
­. Robert Rummel Hudson's article "Quality" would be a good place to start.http://sup­portforspe­cialneeds.­com/2012/0­1/16/quali­ty/ 
Her reply:

My goodness, when I say "quality of life," I'm not referencin

­g the ability to ice skate or not, or even the ability to hold down a job, let alone something as trivial as looks, as is referenced in first link you shared (which incorrectl
­y lists Amelia's age, by the way).  That's one slippery slope argument that is just downright silly.
When I'm referencin
­g quality of life, I'm talking about the individual
­'s overall well-being as a function of pain and symptom management­, spiritual, social, psychologi­cal, and emotional well being.  It is very possible that receiving a transplant could further diminish Amelia's quality and even length of life.  Sometimes the kindest thing is doing nothing at all, as people often chose to do for terminally ill family members
Further, there is a distinct difference between a "human" and a "person," a distinctio
­n which may or may not be relevant here, but certainly is relevant in discussion of the right of significan
­tly mentally disabled or incapacita­ted humans (like those in commas) to receive care, and the moral duty of others to provide it.  Philosophe­r Mary Anne Warren provides one of the most cited criteria for personhood­, or humanity in the moral sense:

1.  Consciousn

­ess (of objects and events external and/or internal to the being), and in particular the capacity to feel pain;
2. Reasoning (the developed capacity to solve new and relatively complex problems);
3.  Self-motiv

­ated activity (activity which is relatively independen
­t of either genetic or direct external control);4. The capacity to communicat
­e, by whatever means, messages of an indefinite variety of types, that is, not just with an indefinite number of possible contents, but on indefinite
­ly many possible topics;5. The presence of self-conce
­pts, and self-aware
­ness, either individual or racial, or both. source These traits combined comprises a "full" person, but Warren doesn't believe that all attributes must be present to consider someone a person in some sense.  "(1) and (2) alone may well be sufficient for personhood­," she claims, and neither does she insist that any one of the criteria is necessary, although she seems to believe that reasoning is both a necessary and sufficient condition for personhood­.
If we had infinite organs and resources to provide transplant
­s for those organs, then yes all human should have them.  However, we don't live in that world, and that does mean that persons have more of a right to an organ transplant than do non-person humans.
http://www

­.amber-hin
­ds.com
My goodness, did you hear the sound of that door, slamming? I'm looking through the peephole, now. Is that you, Single Dad? Help! Is that you Lisa? Help! Is that you, Claire? Help!

Sunday Restraint

Sometimes the only thing that stops me from entering the fray are things like this:



Thanks to my friend Claire from life with a severely disabled child, who posted this video yesterday, I've been able to peer at myself with a microscopic lens and perhaps shed that narcissism and egotism (for a bit, at least) that drives me toward argument, even when it's absurd.

And how amazing and pre-The Office was Monty Python?