Midlife And Treachery

For my US readers:

Since May has been a challenging month for my asthma, it got me thinking about breathing.

Maybe if we narrow the debate down a bit it will start to make sense.

For the sake of this intellectuall excersize, let’s say the only illness or impairment anyone ever got was gradually worsening asthma.

Breathing is the first, most basic human need. I also believe it is a human right. When we can do it, we live. When there’s some trouble doing it it can endanger us quite quickly. (Roomate can go from zero to cyanotic in about two minutes. Scary stuff)

I doubt any opponent of universal access, or even the opponents of single payor would ever say, or even believe that because someone comes down with asthma, they don’t have a right to immediate professional healthcare to handle that, regardless of the economic status of said person with asthma.

Asthma is not something that people acquire because they make “bad” choices. (Making said bad choices can *worsen it* but it doesn’t arrive solely on the basis of lifestyle, so the following argument is out the door (”I don[t believe in universal healthcare because it would mean I have to fork over bucks for someone else’s lousy lifestyle choices”.)

The ideological argument “That’s socialism,” makes me want to scream. So, the *perception* of government funded care being, instead of something that would provide access, but rather a tool, wedded to an ideology, avoiding a *single state run thing* is more important than a loved one getting care when necessary *whether that loved one is rich and employed or poor and/or not employed? They don’t get to continue *breathing* unless they have a job? and or a stack of cash? Sloppy thinking.

Now, we have economic rationing.

(Please tell the Republican folk loudly: “Rationed care” is here *right now.* not some boogeyman that will only show up when we cease to be American {snark} and adopt single payor.) Then, we’d have rationing as intrinsic to the system. Both suck. And yes, I don’t know how to fix it.

Also, and this one I’ve written about before….but drives me nuts.

The people who believe life begins at conception. I’m not telling anyone not to believe that. The belief is there and many believe it. This post is not about arguing that point.

If you believe that conception begins a human being, then *after it is born,* you are committing to attempt to medically assist and educate that life so that it may grow up to fend for itself. That it may eventually be able to *pay for* its own food clothing and shelter. (and you hope, obviously, it’s own health care.)

But if life-as-of-conception is de facto both protected and sacred…when and where does your belief system state that you suddenly have no responsibility for that life? That that life becomes “not your problem” if it cannot be self supporting? Is it only the people that spiral out of control with obviously self destructive behavior and nothing else? A road that from the outside has obvious places where that life could have quit ****ing around and gotten itself together, but did not?

Or is it more? Does the “life is sacred” option stop at a certain economic level? Do you honestly believe that “life is sacred and should be protected at all costs as long as it is not poor enough to need state aid, and that once it needs that help it is no longer sacred to be protected at all costs.

I really want to know.

Does it extend to all ethnic and religious groups? “Life as of conception is sacred. and should be protected at all costs” Where in your belief system does it specifically say “Only the lives I’m comfortable with are sacred and should be protected at all costs? “

Or, is life-as-of-conception suddenly not sacred, when it becomes apparent that that life is complex and different because of impairment or condition or chronic illness and may only partially support itself for a time or never be “self supporting” at all. Or, if it was self supporting and then it’s trajectory altered off the self supporting track by impairment.

Or if your belief says “life as of conception is de facto protected and sacred,” are there actually some lives that cost too much?

Are there lives that fall outside the ’sacred and must be protected at all costs’ phrase if those living those lives live them out in ways that that disturb you?

When do all these variances *stop* being “sacred enough” to accommodate, teach, treat, house, clothe or feed?

If you believe that life is sacred and begins at conception, I submit to you that that belief, *as well as to it’s opponent* demands such detailed examination.

With apologies for WCD for expanding on her excellent post.

Here’s solid proof that any jerk can have a byline.

Lesson:

There was 1969 through 1985 all many many years that I was disliked because of my giftedness….*that had nothing to do with my impairments*

Then 1987-1994 when I was disliked because pious persons suspected, because of my joie de vivre that I might not be as devout as they would have liked. (that has nothing to do with my impairments either.)

Or, many many persons are now irritated with me, even if they like me, because, well, I talk too damn much. (that has nothing to do with my impairments either.)

Every PWD, born or made is people from the moment of birth til death, and doesn’t lose their humanity if disability overtakes them during said timespan. That’s simple, academically accepted studied, paperd, textbooked, internetted, booked, TV’d movied….. It’s all over the place by now.

And we’re supposed to be proud of this able bodied ‘person’ because he’s moved from the pillow angel model to dislike?

He’s shaken to his core, because he’s *just discovered* that people with disabilities are *people!* GMAFB!

I’m reminded of perhaps the most asinine line of dialogue in film I’ve ever heard in a film, when a nerd chides a Deaf woman for rebuffing his advances after his handsome friend has taken a swing at denying her self esteem just because he can in “In the Company of Men”

Said nerd, who figures he’ll get the handsome friends leftover, because she couldn’t possibly have other prospects, basically tells her in outrage that she should be grateful for his lust for her, that she doesn’t get to choose who to date/sleep with because she’s Deaf. Her silence is, thankfully the ultimate kissoff and the apoplectic nerd goes his way.

I’m wishing now that I looked a bit like Pacino in the Godfather:

I consider mi famiglia PWD’s to have been profoundly disrespected by the Guardian article, a steaming pile of literary asshattery. Granted he would have looked just as incomprehensible coming to the Ouch website hat in hand and saying, “Wait, I’m allowed to dislike you? You’re people? That’s amazing, thanks for sharing….” But then we could have patted him on his head, sent him on his way and figured he would be a credit to the able by the time he reached the century mark.

What is most troubling is that since this is in ‘the traditional media,’ just how many Guardian readers are now patting themselves on the back for disabilism?

I do not give myself a pass for this, I’m not trying to justify.  It’s what happened.

It’s  Fall 1992  I’m a caregiver.

And the physical symptoms have reached a place where I physically cannot clean up after them, and percieve and believe that I’ve hit the mental end of the road too. (I was just as clueless as any able bodied person about what technology was available to me to assist him with basic bathing, dressing,  hygenie in his conditon.  I Had No Clue.  Wish I did, but since I’d passed for able my whole damn life, I had no idea how to make things work.

So, I said to the patient.

“This isn’t me leaving you.  Your mom will be here in an hour.  And I will come back from work tomorow and we will figure this out.  But I have to leave now.  I’ll call you when I get to the other side of town, and I’ll call you tomorow.

So, I called a male friend, in front of the patient so he had full knowlege of where I was going not hiding anything.  And I was crystal clear that there would be no ‘hooking up.’

And walked out of my house and left that terminally ill person alone. Walked through a rainstorm at 222nd and Lakeshore at night and waited under shelter in that storm at the bus stop.

In about forty minutes  a taxi slowed, and a door opened.

My male friend was inside, his car wasn’t functioning so he’d gotten a taxi to get me.

We went back to my male friend’s insane little studio.  I called the patient when I got there.  He was safe, (no thanks to me) and more clued in, his mom was there.

“Isn’t this something we can talk about here, now, together?” Immeasurably sad he sounded. As sad as the day he found out.  And I was the reason.

“No, not today. ” I said. “But tomorow, yes tomorrow, absolutely when I get home from work.  We will talk about this. I just can’t talk about it with you today.” And I disconnected the call.

And I spent the next four hours talking things out with this friend about how I would continue to be partially responsible for my patient till the end.  How could this be done? Where might help be and how might my patient and I get it.

Then, my male friend and I fell asleep, and he took me to work the next am.

I did go home, that next afternoon.  The patient’s *doctor* was the one who made the final decision that I could no longer be the sole watchdog, caregiver whatever.  But, was that really true? I’ll never know.  Honestly I would have prefered a third option, that was never given us.  Nursing care by a pro in *our own space.”  But that was unavailable I’m not sure why.  The only options presented were a hospice across town, or hospice care in his mom’s house.

I asked her, and she agreed.  No coercion.  But evidently she and his sisters saw it much differently than I remember it, so they were pissed off, adding to their already incredulous anger that I’d actually ‘left’ him..

Yeah, I’m not a Good Crip.  Never was.

I do miss you.  You were the bouncy third of us, the dancer, english major with the fairyland face…who wished all of life were borders, edges, safe corners that you could dance through.  I got too scary, and the other perhaps too far away….But even my worst would not have hurt you.  We miss you.

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It should be 1958, and you should be jitterbugging whith whomever you please…sleevless black dress and elegance…brains and beauty with no hint of risk taking…It should be an ordered world, of course, but it is not.

I do hear though that your bike is rolling through the maples again in the spring sun.    I miss you.

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I am so lucky that you never bailed.  You in the bad jacket with the merciful heart.   I had a dream once.

It’s late afternoon in northern Italy, and you bought that house.  You’ve decided that everyone you ever knew should be invited…I’ve gotten mobile somehow, and have high heels.  I expect to see you first, but the one I *do* see first is even better, (I hear you give great parties) and I suddenly get that this is the Hereafter party…Else why would my husband be standing in a tuxedo in your entryway in late afternoon sun, lifting a hand up to shade his  bluegreen  eyes to see me?

But really, that was a dream.  I hope you get the house, for real, and invite the ones still here…so we sit at sunset and drink a little and laugh a lot.

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One of my father’s people, ’salt of the earth’ fits you.  You don’t need to be puzzled or concerned about me, you’re just my friend and my cousin.  Simple, straightforward, funny, flawed, enjoyed.  I’ll see you when next I’m home.

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And the enigma, the one I can say anything to who knows things about me my other friends and family do not…who has seen me at the end of my rope and not blinked.

I don’t have to miss you at all, since you’re coming in June.  We laugh as though we are twelve, and nobody gets it…we’re quickwitted, merry, make no excuses, take no prisoners.  I can use twenty thirty, fifty dollar language and you don’t stare as if I’ve just landed from another world. You let me sing.

I’m going to have a diva thing about it.

While the educator in my Blogging Against Disablism post did call me Jeanie….my name, as I stood up at a family party and announced when I was ten…is not

Jeanie…too diminutive and cutesy. or, Jean Ellen, as my father’s people call me.

It’s…just…Jean. That’s it. No more, no less.

I’m not intending to hurt feelings, and I know total strangers would have had no idea.

I’m not quite sure why this matters, but it does.

See, I told you I was mean.