Notes, Notings, and Common Refrains

Because they only made closed captions available to people who donated through their Patreon.

...And accessibility is a universal right, damn it -- not a privilege reserved for those who can pay.

So I was happy, today, to see that TED-ed (A channel of animated, educational, videos aimed at high school students, that consistently captions their videos) has started a series called "There's a Poem for that".

So here's "The Nutritionist" by Andrea Gibson (content warning: it's a poem about mental health and suicidality. It is also fiercely optimistic, and a call to stay alive):

(I'm typing this with a cat firmly anchored in the crook of my right arm. There is no dislodging her)

57 minutes.

I've had this vague thought that I should write something New Yearsy today. But to tell the truth, I've been drawing a blank.

55 minutes.

Things I've been thinking about instead:

1) Douglas Adams and Richard Dawkins. They were sort of a pair when it came to speaking about their atheism -- I think Dawkins invited Adams to read from HHttG at one of his lectures, iirc. So I've kind of been puzzling through why Dawkins makes me clench my jaw after reading through three successive paragraphs, and Adams fills me with warm fuzzies. And I think I've figured it out: As a writer of speculative, humorous, fiction, Adams recognized that even if a story were untrue it still has worth, even if it's a religious story.

2) I'm really liking the way the series Chuck is winding up its final season. The Intersect, the hi-tech pseudo-scientific, quasi-magical plot device which has driven everything in the previous four seasons has been completely written out (saying how would be spoilers), but the story continues without it, based on the characters (who'd of thunk it?), and what they've learned and how they've changed because of the Intersect. Even though it's not there, now.

Really. Characters who are written as people who can be interesting even without the hook that got the show made in the first place. Wow.

I'm going to keep my eye out for this writing team, to see what they come up with in the future. Because that? is something every genre of series TV needs.

38 minutes.

3) My monster bear. That's what I've been working on this weekend. I'm working from the smallest, fiddly pieces up to the large central torso. So far, I have the snout, ears, and one arm sewn. The arm is... a lot skinnier, turned right side out, than I thought it would be. The main body is a "bright" maroon (not bright, bright, but vivid, and more red then blue) and for the highlight color (inside the mouth, the inner ears and inner arms) is gold-ish (recycled sweatpants that I first bought for my second attempt at my freshman year of college ... 25 years ago?) So my bear will be a mix of new and old. I hope the body won't turn out as proportionally skinny as the arms did -- or at least, that one arm.

27 minutes

4) 2011 was a mixed bag. Emotionally, I think I was just sadder than my normal average. But I did some / am doing some nifty stuff (Plato's Nightmare / Aesop's Dream, my Zazzle store)

5) There is a New Year's Carol (which was considered nostalgic and old fashioned in 1647) with this as a second verse:

And now, with new years gifts, each friend
Unto each other they do send;
God grant we may our lives amend
And that the truth may appear.
Now like the snake cast off your skin
Of evil thoughts and wicked sin,
And to amend this new year begin
God send us a merry new year.

(To the tune of Greensleeves)

I wish New Year's was the Big, Gift-Giving Holiday, instead of Christmas. Because it's a (mostly) secular day; even cultures with different Official New Year days (Chinese, Jewish, Persian, etc.) recognize the Common Era calender, for business, if nothing else. So it's got the energy of a global cultural push behind it. And people could exchange gifts without wondering what holiday name to tack in front of it, and worry if they're using the wrong one.

And that global energy is one reason why the New Year (9 minutes) is a bigger, more emotional holiday for me, personally. But, because of all the local emphasis on December 25, nearly every one else around me is burned out just when I'm starting to want to sing.

(I guess this turned into a New Yearsy post after all.)

6-something minutes...

Let me be clear: my cup hath runneth over with privilege my entire life, and I know it: White, cisgendered, heterosexual, economically affluent, English-as-first language, First-world citizen, cognitively normal, and probably more that I haven't even considered.

Still....

( Who pulled my chain on this topic, this time? F'ing IRENE, that's who! )

Cerebral palsy, according to the latest C.D.C. National Health Interview data, affects roughly 0.4% of the population.

It's not the most common cause for general physical disability (including blindness, deafness,* fatigue, chronic pain, immune deficiency, etc.).

It's not the most common cause for mobility impairment among people in general (spinal chord injury, arthritis, M.S., stroke, etc., are all more common).

It's not the most common disability, in general, to affect people from childhood onward (including cognitive disabilities, immune deficiency problems, etc.).

It is the most common reason label for a cluster of reasons that young children are mobility impaired.

When a TV show for toddlers and preschoolers (such as Sesame Street) features a "kid around the audience's age in a wheelchair (or using a walker or crutches)" as a synecdoche for all difference, to teach tolerance, there's a pretty good chance that that kid is living with a cerebral palsy diagnosis.

And even though (as I have said here, before) no two people with C.P. ever have the same condition, the main facets of C.P. do (In my not-so humble opinion) give us reason to see ourselves as part of a common community and subculture within the broader Disability Community.

To whit (and this is all My Own Opinion -- even if you have CP, too, I do not claim to be speaking for you -- this is just the result of a brooding and ruminating over the years:

• Posture and movement, like vision, are given almost magical status and meaning. Slouching, crookedness, crawling, limping, are all linked, symbolically, with animal nature, rather than human nature, and also with the quality of a person's moral character. Navigating through that social stigma in the same years that we are developing our sense of Self must leave as strong a mark on our minds as differently-moving leaves on our muscles and bones.
  
  
• There is no single cause for CP, and in fact, despite (or even because of) medical advances and advanced prenatal and neonatal care, cases of CP have increased over the last 30 years. This (IMNSHO, again) puts "lame and crippled" children-who-grow-to-adults in a similar "Monstrous" category as those children who are born with limb differences (the original meaning of "monster"), simply because the condition/s are a physical manifestation of the Unknown and Therefore Scary. ...And this may be why the Official, "expert" definitions of CP still include a heavy assumption of mental retardation, even 45 years after the hospital psychologist recommended that my mother place me in an Special Institution for my entire life.
  
  
• All disabled people, whatever the cause, are more likely than not to be minorities within their own families. And therefore are less likely to find "safe harbor" in their own homes against the general bigotry of society at large. ...I recognize that the same is true for homosexual and transgendered and genderqueer people as well, but it's a lot more difficult for people with physical disabilities to "pass" as normal, and thus protect ourselves from -isms. And for kids with CP, this struggle usually starts from day one of our lives (Although the diagnosis of CP can be given as late as four years old, in the First World, 90% of cases begin at birth or earlier).
  
  
• Audrey often tells me of J's troubles with The Public (her other main client -- a just-turned-five boy with a different type of CP than mine). And her tales of woe and argh and wtf bring back memories of my own experiences -- mainly, the cultural assumption among figures of authority (Doctors, nurses, therapists, teachers) have the right to claim authority over a person with CP's body -- to physically grab it and manipulate it and perform surgeries on it... and to swoop in and pat you on the head, kiss your cheeks, move your wheelchair, etc. without so much as a by-your-leave.
  
  I survived all that with my personhood and sense of self and integrity intact, and I wouldn't have it any other way. But I think I have sacrificed my comfort with physical and emotional intimacy to get there... And so, am now facing the Oncoming Storm and the Future beyond that alone. And that makes me lonely and sad.
  
  BUT (lastly):
  
  
• Whether the severity of our CP is Level I (walks without limitation) or Level V (Transported in a manual chair -- that is, without any autonomy of movement), we've hardly ever moved through the world normally. I've "met" (online) and know of people who didn't get diagnosed with CP until they were well into adulthood, but they've known, all their lives, that they were clumsy and awkward. Learning about the world and ourselves through that filter from day one gives us unique ...um... "leverage" in problem-solving and learning that even other mobility-impaired folks, who come upon the experience of Different-Moving later in life, don't get.
  
  And that's why people with CP (among other disabilities) have always been, and will always be, part of Humanity -- the idiosyncratic ways that we move are the spark that leads to crucial inventions that benefit the species.
  
  So, for that (among other things), I'm proud to be the monster that I am...

---

*I'm including deafness for those Hearing people who lose their sense of hearing, but do not identify as culturally Deaf.

A couple of weeks ago, I caught an episode from Philosophy: A Guide to Happiness, and this one focused on Epicurus (the one whom "Epicurian delights") is named for. He's acquired a reputation through history of being a Hedonist, because he believed that if life was the means, pleasure and happiness was the end.

But really... his definition of "Happiness" was "calm contentment."

All we have to go on in life is what we feel through our senses, and that the Gods don't care if we're grateful to them or angry at them, so that if we want a pleasurable life, we have to create it for ourselves, in the here and now But part of seeking pleasure is to avoid trouble and pain and worry. So overindulging in that nine-layer chocolate cake with a cream-cheese rum frosting may give us a few minutes of intense pleasure, it will also give us hours of heartburn in the short term, and heart disease and illness in the long term. His favorite meal was: vegetables, whole-grain bread, a few olives, and water. Throw in some potted cheese, and you have a feast.

No, for him, happiness came from having three things:

Friendship (first, last, and always)
Freedom, and
Contemplation

As was pointed out in this episode, one of his maxims was never to eat alone: always think about who you will share your food with, before you give one second of thought about what that food will be.

Here's the middle part of the episode -- the bit where the lightbulb really clicked on for me:



That's where I realized that that's why I was happiest when I was in college and university, and why I'm not so happy now.

In America, by law (since the 1970s), if a college or university receives any money from the government for any of its services, the entire campus has to be barrier-free, more or less. So that while I was on campus, I had full Freedom.

Because my dorm rooms did not have a kitchen I could use, I had to go to a public area (cafeteria or the student union) for my meals. So, while I sometimes ate alone, I had company and companionship for most of my meals -- and the dodgy cafeteria food was more than compensated for by the three-hour conversations about life, the universe, and everything, and the laughter that went with that.

And the whole point of being there was contemplation and thought.

Now, I live in a neighborhood without (meaningful) accessible public transportation, and without even sidewalks, so I don't have anywhere safe to drive my wheelchair beyond the end of my driveway. So if I want to go anywhere, or do anything, I have to arrange it with my aide, first, and her schedule is locked into the schedules of her other clients. So that's Freedom crossed off the list.

And, because Freedom is crossed off the list, instead of eating most of my meals with companionship, I eat all of them alone. When Dad was alive, even though he was in New York, and I was here in Virginia, we at least kept more or less the same schedule, and I'd call him on the phone at right around dinnertime, so I at least have intellectual companionship, if not physical companionship, while I ate.

I still have time and the capacity for contemplation and self-analysis. And I have my friends (you guys -- I love you... you know that, right?), but there's a serious Space/Time-disconnect when our only interaction is through the Internet, and it doesn't feel like we're together.

Thinking through your troubles doesn't do you much good if you don't have the freedom to do anything about them, or friends to have at your back to help you, you know?

But yeah. I'm an Epicuran in the original sense of the word. Money can't buy me love. ...But if I had the money, I'd buy all my friends a videophone, and we could have a massive teleconference/party. Yeah!!