but for Katie Jones
and perhaps more importantly for her parents…here goes.
I’m 46 years old. I have cerebral palsy [admittedly a different and less affecting form than Katie Jones has ] plus four other impairments…some of those other physical problems are moving into high gear. ….but even if my timeclock is moving fast toward something crappy….it doesn’t mean that any of my time, past and future is not worth life and involving myself in it.
My parents were told I would die as a baby.
They made the trip in Ohio blizzards from their college campus to visit me as I waited out the first two months of my life in an incubator
and grew some more.
My parents were told by a completely wrongheaded doctor that I would be profoundly cognitively impaired.
Um, Sorry to invalidate that degree on your Ego Wall Doc…but no.
I performed in plays
I finished elementary school,junior high,high school, college and one and a half masters degrees
And I made some lousy choices in my life.
some of the things I deal with now are truly self-inflicted
and some are not, they are directly related to my impairment.
But would I want to have missed it because someone responsible for my welfare was told that my cp was terminal, tragic, life threatening, by medical persons?
Medics are often necessary to consult.
They lay valuable groundwork…
and then, you and your parent’s job Katie, is to use what’s helpful and figure the rest out on your own.
My parents loved me…
But they had serious demons to wrestle with that were *their own* before I was ever created.
Because of those demons, they were sometimes (In my father’s case nearly all the time) not great at parenting. They did not turn out to be the best equipped to raise someone with impairments…but they never saw me as ‘tragic.’ they wanted me to achieve and worked hard to help me do so while, paradoxically resenting the limitations that my very existence, and later my limitations placed on their lives.
They loved me….but they resented me too. And maybe, that’s why I gave it such a long try to live out in the world. Out of sheer cussedness.
Katie’s parents sound nothing like that. They sound like they are truly *invested* in being good parents.
I’m not going to paint them in a bad light
But I’m going to pretend I’m sitting accross the table from Katie’s Mom and Dad…
Dear Katie’s parents:
I just think she has a future. an actual real three dimensional future…with length, breadth and depth to it.
I’m sorry for you. I’m sorry you believe that it’s necessary to set the stage for the end of her life now. I understand this is your choice to make and you actually believe you are doing what’s best.
I’m resolved to hope for a Katie that is a cantakerous, beautiful disabled grown up woman.
I implore anyone who is offended by my discussion of religion or religion in general in this next post to skip it.
This is not meant as a place for me to impose my admittedly patchwork experience of religion or *my* particular beliefs on anybody.
It started as a comment over at bridgett’s place, and I feel the need for some expansion…
- I am on the way to solving my (lack of/wish for/pragmatic *need* for) a spiritual place….
Things that were deal breakers for me ten years ago are deal breakers no longer….
I have to consider parking and access issues *first* If I can’t get *into* a building and talk to Deity in my way…then ferget it.
Then, I think of music, and *after that* doctrine….
The last very lovely, very accessible Protestant place was frighteningly evangelical, and I got dissed for not getting healed, so…huh uh….nope. (and just this morning on the news, one of their [former] ministers of music was brought up on charges for alleged misconduct with a minor…)
The local UCC’ers went from progressive to archly conserviative with a retirement of the minister…..
I found a church fifteen minutes away that is modern, accessible, great music doesn’t require imposition of my belief system on someone else…. and is more okay with singletude than any other place I’ve been….
I have *serious* doctrinal issues there relating to communion and the role of women but, to be fair only the UCC’ers more progressive congregations and the UU’s recognize women as first class congregants) It’s not just this new place that bars women from full participation…many doctrines in the evangelical churches do the same.
but I’m going to have to suck it up if I am never able to leave Denver and and have to rely on the “kindness of strangers” to help out when the roomate cannot do PCA stuff any more….and this denomination has at least a *framework* for real world outreach and aid to members who are elderly and/or impaired…. Whether the local congregation lives up to that??? we will see.
There are three categories of reasons I’m considering this….
The spiritual part takes a good deal of learning and study and I’ve missed that.
I’m hoping to find a place where just *being* and also praying (quietly, civilizedly *internaly* for hopes sake) are accepted. Public humiliation for percieved sin is not presently a part of the liturgy…I will *not* miss that particularly prevalent aspect of many evangelical churches.
Personally I find such praying a powerful thing. I’ve been looking to do that.
The building is extremely accessible and modern, and I am going to get a charge out of that. (the more consistently faithful might point out that Deity is teaching me some humility and sacrifice [smile]– the only profoundly *inaccessible* part of the building? The choir loft…)
The downtown churches please me the most doctrinally, but there are minimal accessibility provisions and no parking anyplace….my scooter can’t get into some of them…and even the manual wheelchair was damaged when I tried to wrestle myself into the foyer of the downtown UU’s….
While I’m aware that *every* denomination has its bad actors…I’m quite certain that I’m capable (at least for now) of discerning any threat to my physical and intellectual autonomy…
I can’t stand it that my level of impairment has gotten to the point that such pragmatic and difficult issues *have to begin to direct* which pew I decide to sit in.
But, there it is.
The third category is private and positive, but has to do with the spiritual side as well…and the stubborness I cannot let go of…just yet…
That I call home….
Wednesday morning the 26th arrived and it was back to work…except that the main entrance walkway and the sidewalk was so completely unshoveled as to make it impassable for me and my wheelchair to leave my home.
Roomate *tried to shovel a path herself* got bad asthma for her pains and couldn’t go to work.
I then called the maintenance line…
“No one’s in the office until the 28th”
“Well, here’s my issue. My roomate just tried to break a path for me and got herself an asthma attack.
I have a disability, I’m in a wheelchair….but I work for a living and I need to leave this building to go to my job in order to earn the money to pay your rent each month.”
(Without much hope for resolution) “Well I’ll page it out…”)
By 9:30 am the walk had been shoveled and I could get out. When I left the building the maintenance guy gave me *attitude* for calling the maintenance line….
We’re not given the telephone number of the suite he lives in here, and we didn’t know which one he lived in….
My shift starts at 8:30….
I had to call in and tell my boss, right before review time….
“I’m fine. I’m not sick, they just haven’t shoveled yet and I cannot leave the building.”
I went in nearly two hours late when they were already down people.
So, since another storm was due in Wednesday night, I shrugged my shoulders, said goodby to any frivolous coolness I might have bought with my smaller Christmas Checks…
And called the LaQuinta five minutes from work and booked it for the nights until there’d be someone in the office who could roust maintenance out of bed and get the shoveling done.
At this juncture I cannot afford to miss work for dumbass workflow or mechanical failures (like the elevator not working earlier in the year…)
When the lease is up, I will have to move. To a place with two elevators, underground parking…a much less accessible bathroom and no accessible kitchen… (found it already, very close to work, comparable rent etc etc etc.)
(I miss the days when the manager lived here. The snowblower started at 5:30 am…)
I am still stinkin’ pissed and if I had the energy to be a bitch about it I’d hand the LaQuinta bill to the management. What *really* got me was the attitude…
*I* *need* *to* *leave* *the* *building!* What is (arrogant,entitled, diva-ish) about that?
It is not a crime:
To have impairments
To need assistance because of said impariments to manage one’s life
To admit to and not *hide* being smart.
To be a woman
To be single
To be heavyset
To use the right to free speech
To *work for a living*
These things are not crimes.
(reasons for said snark will follow in another post.)
Arrangements of Christmas music can run the gamut from kitschy, to sweet, to awe-inspring, to silly…
I have forgotten, or blissfully lost memories of two of three Christmas recordings that my immediate family grooved on at Christmas time….
But the *third*….
(It had some clunkers, and those I just skip over…but the ones that *work*)
The classical 1959’s “The Glorious Sounds of Christmas” The Philadelphia Orchestra, conducted by Eugene Ormandy…
I remember it from my earliest memories…through the good Kid Christmases…and the turbulent and troubled ones of adolescence….to the ones full of as much despair as joy….and the *relief* I felt when I found a CD copy and brought it back into my home about three years back after a long drought….
The blaster “Joy to the World” and humorous backrounds given to “God Rest Ye Merry Gentlemen” are what chimed the kid in me….and made and make me happy no matter my circumstances…I am drawn to smile, convinced to feel joy.
His arrangement of “Ave Maria,” was the first song that made me hush up and be still and listen…and think what a marvelous idea, to sing praises to a woman.
The take on “O Little Town of Bethlehem,” taught by just it’s arrangement that first, one should be still and quiet, so as not to waken the Christ Child….and that this event had awesome implications, larger than three people waiting out the cold in a stable…”The First Noel,” feels similar without being repetitive, first a mystical anticipatory listening of the shepherds in the night, and the “town crier,” broader message of the last lines…
And when you are full of despair during a holiday, feeling so much lousy stuff that you think you will never laugh again…
The instrumental arrangement of O Come, O Come Immanuel is such a cry of the heart, that it nearly empathizes with the listener…before I knew the words, I knew it was asking for something…
Whatever you celebrate, my wish for my readers at this time is that they have music in their collections that combine uplift, good memories, and the craft and of great instrumental and/or vocal skill…
With heart and soul and voice.