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The Label I’m Not Understanding

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Department Of Grief And Relief

I’m thinking about my friends, JWW and MW.  MW’s mother, Molly (a lovely Irish name for a lovely Irish-American lady) died last Monday, after a long physical and mental decline.  Molly was never officially diagnosed with Alzheimer’s but had significant memory and cognitive problems over the past decade. After her husband died she lived with MW’s sister for several years,  then came to stay with MW and JWW.

 

 

Molly was a sweet woman, and maintained her gentle and loving disposition (she was a favorite at the Memory Care center MW & JWW eventually found for her, in a nearby town), and did not seem to descend into the fear and anger that can affect people with memory problems. It was sweet, watching MW and JWW interact with Molly, showing her unqualified patience and love. But as is often the case with an elderly parent who can no longer live independently, love cannot conquer all. MW & JWW realized they could not provide Molly with the safe, 24/7 care she needed, which was made evident to them in many ways over many months, particularly on the day when JWW came downstairs to discover that Molly had removed her favorite polyester shirt from the dryer, put it on, and realized it was still damp. It seemed perfectly reasonable to Molly to finish drying her shirt – while she was wearing it – by holding her arms over an open flame on the stove…which is how JWW found her (fortunately, before Molly set herself on fire).

Now, MW & JWW find themselves in that odd life stage, as I was with the death of my own mother: between grief and relief.  Such a strange feeling, also – to find yourself feeling both sad and somewhat amused by the fact that you feel like an orphan in your 60s.  All the orphans of classic literature were way younger, right?

 

 

 

 

*   *   *

Department Of Tricky Questions, Trickier Answers

Developmentally delayed.

Dateline: earlier this week, doing an am workout in our family room, listening to a podcast story.  The afore-mentioned description – developmentally delayed  –  was used in the podcast to describe the podcast story narrator’s brother, who had a broad list of cognitive and emotional impediments.  MH entered the room just in time to hear the term DD. He paused for a moment, then posed a question (to the universe, as much as to moiself), “What does that mean?”

He was not exactly being rhetorical.  I knew that he knew what DD meant…then began to think beyond what I thought I knew…and, really, what does it mean?

I told him a few of the emotional and cognitive defects (of the narrator’s brother) which had been mentioned in the podcast ,and offered my opinion that the DD label, in the particular case of that podcast and in what has become its common usage, is it meant to replace an older term which has now entered the retirement home of words-not-to-be-used-due-to-derogatory-potential: “mentally retarded.”

 

 

The concept and label of mental retardation was widely used, by both laypersons and medical professionals, up until relatively recently.   [1]

In the 1950s the word retarded was progressive, an improvement over feebleminded, imbecile, moron. It shares a root with ritardando, a musical term meaning a gradual decrease in tempo. Think: the musicians’ fingers letting the moments stretch between their notes.
To retard, to slow down. As in: Your baby’s growth is retarded.
But retarded soon came to mean dumb or incompetent. As in: I just lost my phone. I’m so retarded.
(from “The R-Word,” by Heather Kirn Lanier, The Sun )

 

MH and I began to wonder aloud with one another (one of our more frequent conversational formats) about the fact that although the term developmentally delayed may be less open to derogatory usage by laypersons, it isn’t very helpful in the way that all terminology is supposed to be: by being specific or descriptive.

Close-to-the-heart example: My friend FP is blind. FP once told me about her scornful objection to the term visually impaired.  In FP’s experience, some Well-Meaning People ®  think the word blind is somehow insulting. One WMP actually corrected FP when FP described herself as blind: “Oh, you mean you’re ‘visually impaired?’ “

 

“Hell no, I mean, I’m BLIND.”

 

To FP, “blind” is merely, vitally factual:  I’m not simply “impaired,” I’m blind, and that is important for people to know. It’s not that I just see things dimly or unclearly – I don’t see them at all, so when I ask for directions to the bathroom and you tell me it’s ten steps ahead but don’t tell me that there is an ottoman in the way I will trip over it and break my #*%!? nose.

Delay, in its various noun/verb/adverb/adjective forms, involves actions or objects that are postponed and hindered. But delay also carries with it the possibility of catching up.  In describing people as having developmental delays, the term is so broad/vague as to provide little functional information: I have heard it applied to a 4th grader with mild dyslexia as well as to a young adult born with such severe brain deficits he has never been able to communicate, much less toilet, feed and care for himself and thus has required 24 hour professional/institutional care since his toddlerhood.

The scope of conditions categorized under the label intellectual disabilities is broad, and with early intervention the outcomes for many developmentally delayed children (who is the past may have been labeled mentally retarded) is much brighter than in decades ago. But it’s not as if, say, the boy with Down Syndrome is merely delayed academically when compared with his older sister, who is taking calculus as a junior in high school.  It’s not as if, Sure, he’s behind now, but he’ll catch up one day and do higher mathematics – it’ll just take him a few years longer.

What would be an alternative, more accurate label: developmentally compromised ?  It doesn’t seem like there could be any term that would be acceptable to all, or even most people   [2] …and maybe that’s the point.  Here’s a realization worthy of a Hallmark Channel movie: treat everyone as individuals; no one label can tell you all of the strengths or disabilities (excuse me, challenges?   [3] ) facing a particular person.

Still…today’s “She has a developmental delay” isn’t ultimately more informative than yesterday’s, “He has a mental retardation.”

And of course, Things Being What They Are ® , MH and moiself both felt somewhat… awkward…even discussing the issue, just the two of us, no language cops in sight.

 

 

*   *   *

Department Of A Headline That Is So Evocative Why Bother
Reading The Newspaper Article – Just Use Your Imagination
Because Whatever You Come Up With Is Bound To Be As (If Not More)
 Entertaining Than The Real Story

 

“Children Removed From A Facility That Limited Tampons”

(The Oregonian, 3-29-19)

 

This has nothing to do with the headline, but imagine a picture that did?

 

*   *   *

Department Of No April Foolin’

Yet another story inspired by a story I was listening to – this one on April 1, courtesy of NPR’s All Things Considered:  How Vanity License Plates Are Approved and Denied in California.

Dateline: sometime in 1980; moiself is down in SoCal, visiting my parents. My mother shows me a newspaper clipping, about an employee of the newspaper (The Orange County Register) who had recently won an “argument” with the California DMV.  “Don’t you know this guy?” my mother asks me.

I scan the article. “Peter?!” I burst out laughing. “Yeah, I know that Schmuck.”

 

Peter looks nothing like a baby sloth in pajamas, but I don’t have a recent photo of him.

 

I went to high school with He Who Was To Become sportswriter/columnist Peter Schmuck. He graduated the year before me; we had mutual friends (mostly the high school journalism crew) but didn’t know each other well. Moiself, like some of his peers, I’d guess, initially pitied then almost immediately admired or at least respected Peter, for having to deal with a first-last name combination considered redundant. Many of us who knew him attributed Peter’s sense of humor and in-your-face attitude – a combination of sarcasm and assertiveness sometimes bordering on aggression  [4] – to having grown up with that name.  It seems PS would at least partially agree with that sentiment, as per his interview with fellow journalist Steve Marantz:

“I‘m the only person in the world who thinks it was a big advantage to grow up with the last name Schmuck.. I’m pretty sure the distinctiveness of the name has helped me throughout my career. It also has given me a thicker skin – in a ‘Boy Named Sue’ kind of way – in a business where that isn’t a bad thing to have.”

I am not wandering off on yet another digression. Here comes the newspaper article/DMV story tie-in:

In 1980 Peter (or, his girlfriend at the time, as Peter has said) applied for a vanity license plate with his last name on it. That was the subject of the newspaper article my mother showed me: Peter Schmuck had been denied the vanity plate SCHMUCK because, in a letter the DMV sent to Peter, the DMV claimed schmuck was a Yiddish indecency.

I found that whole incident to be wonderfully WTF-ish to the nth (thank you, NPR, for the memory prod).  I still smile to picture a state government flunkie whose job it was to tell a person that the person’s given/authentic/legal surname was indecent (Dude, you’re the DMV! Look up his driver’s license, IT’S HIS NAME).

As well as his first 15 minutes of fame, Peter Schmuck got his license plate. Yes, the Good Guy prevailed in The Great License Plate Indecency Skirmish. I saw it on Peter’s car (which, if memory serves, he referred to as the Schmuckmobile).  Following his stint at The Register, Peter moved East and landed a long-time gig as a sports reporter and columnist for The Baltimore Sun.  I forgot to ask Peter, when I saw him at a Baltimore Orioles home game oh-so-many years ago, whether he got the state of Maryland to issue him a new plate.

 

Or, in a hitherto unknown (to moiself) assignment, did Peter spend some time covering the great sport of Iditarod?

*   *   *

May you, when it is your turn, find a graceful way to navigate between grief and relief;
May you be careful with your labels and also patient with those who use them;
May your choice of vanity license plates bring joy to the simple-minded masses;
…and may the hijinks ensue.

Thanks for stopping by.  Au Vendredi!

*   *   *

 

[1] In 2010 President Barack Obama signed “Rosa’s Bill,” (approved unanimously by Congress), which required the federal government to replace the terms “mental retardation” “and “mentally retarded” with, respectively,  “intellectual disability” and “individual with an intellectual disability” in policy documents.

[2] And trust me, when you get rid of “retard/retardation” it is replaced by turning the supposedly gentler term into a pejorative: “What are you, a special needs” kid?” which I heard, pronounced with multisyllabic sarcasm, along with “learning disabled” et al, on my childrens’ school yard playgrounds. Never doubt the ability of a grade schooler to turn the most well-intentioned label into a slur.

[3] Another adjective I’ve heard both embraced and mocked, and by people supposedly on the same side of the disability rights movement.  “Intellectually Challenged” – that’s me, trying to follow a chess match.

[4] Translation:  in high school, I thought him somewhat of an asshole. I figured he likely held the same opinion about me. Later on, I came to be, and still am, quite fond of him.

The Phrase I’m Not Saving

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RESCUE 911
 We’re lost in the woods, and need an extra large with mushrooms and double cheese…and a helicopter, please.

Join our thrilling, reality-based series, during which MH and I discover our son’s true concerns should we ever end up lost or injured in the wilderness.

Dateline:  Sunday, July 7.  MH and I planned on driving up to Vancouver, WA to go hiking on a new (to us) trail. We invited son K, who declined. [1]

As I was lacing up my boots I informed K of our destination, and told him I was leaving a map of the trail on my computer.  I decided to test his hiking/outdoor recreation, “Buddy system” safety awareness [2] by asking him, “So, what would you do if we did not return by a certain time?”

“What time?” K asked.

“Absolutely, by dinner time,” I clarified. “But we should be back way before that.”

“Well…” K steepled his fingers in front of his face in a Mr. Spock-like pose of thoughtfulness.  “I haven’t been to Pizza Schmizza in a while….

chopper

                              *   *   *

As already noted on this week’s The Mighty Quinn FB page, my calendar said that July 8 was Toot Your Own Horn day.  (It also said that July 2 was Eat Nothing But Dark Chocolate For Every Meal and Your Teeth Will Be Bright and Your Breath Minty Fresh day.  Don’t you wish you had my calendar?) Thus, I excerpted one of my favorite reviews of The Mighty Quinn, which is on Goodreads, courtesy of fellow writer, SCM:

I should start by saying what THE MIGHTY QUINN is not. It’s not for every middle grade reader, nor is it a book for a bright younger kid whose parents read MG books out loud before bed. (I tried.)

THE MIGHTY QUINN is a smart book, and it’s going to appeal to brighter MG readers. It’s a clever and funny book about the Borgia-like scheming simmering below the surface of elementary school social life.

It’s about what it’s like to be raised progressively when peers are, well, not.

 It’s about what it’s like to be raised in a free-thinking and non-religious home, when peers are, well, not.

It’s about what it’s like to be a clever and funny kid when peers are, well, not.

What’s more, it’s the rare book for smart MG readers and their parents to read together. A smart MG reader is doing most reading without parents. This is, in some ways, a last hurrah for those bedtime reading rituals that parents miss more than kids—although it never seems to feel like that when you’re reading Mike Mulligan for the hundredth time.

Bonus: there’s plenty that will make parents laugh.

SCM gave the book a 5 star rating, and states that it is not for every middle grade reader [3].  I liked that. I for one am turned off by reviews which proclaim, Everyone will/must like this book! Because, that’s never the case, is it?  Also, the same, I-like-these qualities the reviewer lists about TMQ would be red flags for those people (certain adults, I think, more than certain children) who, sadly but frankly, are predisposed to not like a book that presents a sympathetic portrayal of kids who “…are raised progressively.”

And so it goes.

Oh, and now that I don’t have to do it every night, I do miss reading Mike Mulligan. MikeMulligan

*   *   *

This week I attended my first professional baseball game in…I truly do not remember how long it has been. [4] Growing up in So Cal, my summers were filled with trips to Chavez Ravine for Dodger games and Anaheim Stadium for Angel games (and if you climbed to the top of our backyard’s big pine tree you could see the stadium’s halo light up when an Angel hit a home run).

I forget what year it happened, but after one player/owner strike too many – when I asked myself, hmmm, which group of millionaires do I feel sorry for? – I lost interest.  I went from a high schooler who subscribed to Sports Illustrated, someone who could quote lengthy passages from Ball Four, someone who, much to MH’s befuddlement, could whip anyone’s ass in a 1970s Dodger’s baseball trivia contest, [5] to someone who just didn’t give a flying festering fartbag about professional sports.

Except, of course, when Kirk Gibson hit his gimp, game-winning home run during the 1988 World Series, which cause my younger sister (whose husband was rooting for the Oakland A’s) and I to exchange, gloating phone calls: YEEESSSS!

Once again, I digress.

So, on Monday I dragged MH, son K and his friend and moiself to Hillsboro’s new baseball stadium, home of the Hillsboro Hops, Hillsboro’s new new minor league team .  I really, really, could have done without the inane announcer’s patter and the kiddie tire races and kiddie hoop shooting contests and kiddie bunny hops and the other “amusements” between innings (Hades forbid we should be content to merely sit with our thoughts or converse with other attendees – we must be ENTERTAINED at all moments).

That irritation aside, hearing the distinctive slap of a 94 mph pitch hitting the catcher’s mitt, watching fit young men in fit uniforms [6] loping around a field on a hot summer evening, savoring a bag of peanuts roasted in the shell – the night brought back primal memories for me.  The night also provided a reminder of a most epic parental fail, when my 20 year old son made a comment which indicated he did not know how many innings are in a baseball game.

Ball Four

*   *   *

“It has never been easier to be a writer, and it has never been harder to be a professional writer.”
(Adam Gopnick, The New Yorker, as quoted in the Spring 2013 Authors Guild Bulletin)

sadwriter

Because the Authors Guild takes their mandate seriously (“…the nation’s leading advocate for writers’ interests in effective copyright protection, fair contracts and free expression….”), their bulletin is full of the news that matters to writers; i.e., reports on how AG attorneys and advocates are fighting the good [7] fight against the erosion of authors’  income streams and copyright and royalty protection and trends in e-publishing….  Almost all of it is really, really, really depressing:

E-books are way less expensive for publishers to produce, but instead of being more generous to authors, the major publishing houses all rigidly insist on clauses limiting e-book royalties to (that which gives authors ) roughly half the traditional royalty on hardcover books….Five of six major publishing houses were sued by the DOJ’s anti-trust division for fixing e-book prices…numerous pirate sites (supported by advertising on Yahoo and Google) offer new and old e-books for free (and too many Americans, especially younger ones, seem to believe that if it’s on the internet it belongs to everybody – even while they pay for cable)…Amazon acquired a patent to re-sell e-books… [8]

I think when the next issue of the Authors Guild Bulletin arrives I’ll save time and, before turning the first page, assume my custom-designed, Author’s Yoga Pose ®.

YOGA

 Whattheasana
(aka Author’s Pose)

Whattheasana is a pose of realization.  It transfers tension from your neck, shoulders and back to your brain bucket, where tension belongs.

(1) Begin in a kneeling position, on the hardest surface you can find.

(2) Drop your buttocks to your heels. Exhale and stretch your torso down and forward, lengthening your tailbone from the pelvis as you rest your abdomen atop your thighs, your forehead on the floor. Inhale one long breath of futility.

(3) Exhale. Place your hands on the floor alongside your torso, palms up in the universal gesture of surrender. Visualize your most recent royalty statement and/or the Ten Must-Have Marketing Strategies for Writers! conference come-ons in your email inbox. Let the weight of the world rest on your shoulders, broadening your scapulae across your back and further grinding your forehead into the floor.

(4) Inhale, extend your cervical vertebrae and raise your forehead several inches above the floor. Exhale, release your forehead to gravity and chant your author’s mantra (“d-uh”) as your forehead hits the floor with a chakra-satisfying thud.  Repeat this sequence, staying in the pose for one to five minutes, or until the half-hearted urge to even consider enrolling in any Social Media Web-inar/Tutorials subsides.

*   *   *

Pacas and Toucans and Turtles, Oh My!

a baby leatherback turtle heads for the ocean at Pacuare

a baby leatherback turtle heads for the ocean at Pacuare

Belle returned late Tuesday evening from a nine day trip to Costa Rica.  She and 17 other Oregon Zoo Teen leaders were participating in an Ecology International Field Service Project.  The kids and their adult guides helped biologists at La Suerte [9] Biological Field Station and the Pacuare Nature Reserve gather data on sea turtles, and the Costa Rican mosquitoes helped themselves to fresh American teenage blood.

The pangs of missing my daughter didn’t hit me until July 4, when I was out running errands/having lunch with MH.  I passed the time at the local animal shelter while MH roamed the aisles of Lowe’s, and at the shelter I saw The Cutest Kitten In the World ® which, fortunately, had a sign on its kennel indicating it had already been adopted.  Belle would have adored the kitten, I thought…and it’s a good thing she’s in Costa Rica, because she just possibly would have found a way to talk MH and I out of our Crazy Cat People  Limit. [10]

After home improvement errands MH & I had lunch at Red Robin, where I was reminded of something I do not miss about my daughter, or my son, now that both of them have been housebroken for some time.  When I used the RR’s restroom I overheard the distinctive dialogue which indicated the presence of a Six Legged Monster [11] occupying the handicapped stall.

“Mommy, I did a stinker!”

“Yes, honey, you did a stinker.”

“No, YOU did a stinker!”

“Okay, I did a stinker – no, wait, don’t open the door, your sister isn’t done yet….”

sequential

Two minutes later, in the parking lot, there was yet another parent/child/potty story unfolding: a young mother was changing her infant son’s messy diaper, using the rear of her SUV as a changing table. With the car’s hatchback door up, passersby (including yours truly) had quite the view.

I’m not going to tell the story in all of its Technicolor glory.  I’d like to save the phrase poop-encrusted scrotum for 2014.

Happy Independence Day, indeed.  And the hijinks ensued.

 

Thanks for stopping by.  Au Vendredi!


[1] There were, as always, aliens to be battled in cyberspace.

[2] Always inform friends and family about your trip itinerary, ideally include a map and tell someone where you are going and when you expect to return….

[3] I like her subtle nudge re how TMQ appeals to the “brighter” reader. Ahem.

[4] Remembered during the edit! It was in October ’92, at Baltimore’s beautiful Oriole Park: MH & I with my groovy friend and fellow Ball Four lover Ernie Kyger, with a special guest appearance by Baltimore Sun sportswriter (and high school friend) Peter Schmuck .

[5] Name the Dodgers infield that played together for more than eight seasons — a major league record! (Cey, Lopes, Russell & Garvey)

[6] I’m married, not dead.

[7] If ultimately futile, in my humble yet realistic opinion.

[8] These feel-good excerpts are from the From the President article by AG President Scott Turow.

[9] Idiomatic translation: good luck with the heron-sized mosquitoes.

[10] I say it’s four (naturally, we have four cats).  Belle insists you’re not truly in Crazy Cat People territory until six.

[11] A mother and her two young children.