Did I Miss Something?

Finally

2007-07-01T15:17:00.000-06:00

all the posts from here, with categories have moved to the new place..this will be in place for about another thirty days...and then this blog will be deleted.

if the link doesn't work, try,

http://midlifeandtreachery.wordpress.com

Blogging Against Disablism Day May 1 2007

2007-04-22T09:42:00.000-06:00

I can't put the banner up on the new blog sidebar, but I thought I'd post it here as a reminder.

People always said I moved too many times from place to place...

2007-03-10T12:30:00.000-07:00

Looks like they were right.

This blog has moved...I may be able to bring the Blogger posts over and I am in the process of building the link list that will move there....but at the very least going forward I'll be publishing strictly at the new site and comments here are now shut off.

The new *title* of the blog is: Midlife And Treachery, as I *meant* to do with this, but blew it in the beginning...

And the new URL http://midlifeandtreachery.wordpress.com

Comment Moderation

2007-03-08T19:50:00.000-07:00

I really didn't want to have to do this, but as a spam commenter will not stop leaving annoying spam, comment moderation is enabled...

I'm also contemplating a move to Wordpress soon, but I haven't got all the bugs out yet.

Division: Sabotage or Reality?

2007-03-07T19:58:00.000-07:00

Because there are extended wars being conducted and triage technology has improved a great deal ....many more soldiers, men and women alike are coming home with impairments.

There's been the Walter Reed debacle and widening criticism that the VA network, already overextended, will simply be unable to address the needs of the returning veterans....

I'm watching this from a different angle.

There are divisions on top of divisions in the disability community that, in my judgement are one of the factors in the slow nature of positive change for the community as a whole.

When one of the "Murderball" subjects stated fairly clearly that one of the factors in his disabling accident was "male pattern foolishness," I thought: Is it just me or are those types of accidents/injuries more understood by men, because they [anecdotally speaking] happen to men more often? And does that mean that when our government plans for "disability," it has the single template of the "accidental spinal cord injury victim" as the pattern around which any aid or rehab gets designed?

If that's so, the war veterans will bring yet another pattern that has to be adjusted to and adapted to and *served* as soon as possible.

And that will be another division. I've no doubt that those whose impairments result from military service are given more respect, more acceptance of their newfound limitations than civilians with impairments. I'm not arguing that they should not, I'm stating that difference as problematic for the rest of us.

Will this mean a widening of the different views of impaired women versus impaired men? I believe that for the most part it will. (except for military women, who I believe will recieve the same amount of respect and support that their male counterparts do, if they come home to the States with impairments due to the war.)

If women with impairments, the rest of the civilian disabled, and the military disabled could instead find common ground and mutual benefit...that would be another example of why we *all* need homes of Universal design, access to housing, education and (where possible) employment. The support our disabled soldiers recieve should be a teaching tool of what's needed for the disability community as a whole, not something that is never considered for civilians with impairments.

...Just wondering how this will be handled over time...

But I do have a list of grievances

2007-03-06T19:52:00.000-07:00

1. I hate my car. The car I pay half of and cannot drive. I hate my car. It's supposed to last until early 2008 when the end of other debts means a new car payment is within my means.
1500.00 of maintenance right as my job began.

2. 418.00 to pull the damn tooth. No insurance, so cash....(sigh)

Up one flight of stairs to get to the oral surgeon's office who claims "undue hardship" after residing in the same building for 40 years...his "story" about why he has no ramp...The city won't permit an easment for a ramp facing the main drag because the building is too close to the street...and they rely on the "grace" of the church next door for parking, and since they don't own the lot no ramp can be placed there. I had to stand, and be propped up to get x-rayed.
I'm glad it happened because it was quite the eye opener...the first time physical access was needed to a building and had I not been able to haul myself upstairs it would have been denied...I have a better, more visceral understanding of so many of the cases I read about on the Ragged Edge website or the Justice for all listserv.

3. "Accessible" bathrooms that aren't: they require a tightrope walk around them leaning on the walls in order to use them. I'm beginning to hate the word accessible, because when it falls flat, I feel I've been lied to or misled.

4. Media surveys that mean nothing and waste a half hour.

What needs doing...

2007-03-06T19:47:00.000-07:00

I'm feeling a bit of guilt/uneasiness/concern...I have been less than good at keeping up with issues that concern me here online since I began working.

Also, past and present work means that on some particular issues I must remain silent...

I continue to heckle some Congresspersons via email and petitions about those issues that concern me...

But, after eight hours...I come home and generally say Pfft. I'm tired.

Gotta Dance

2007-03-05T18:49:00.000-07:00

This has nothing to do with nothing, but...

TCM is doing a Gene Kelly retrospective right now...I've always enjoyed dancing, watching or doing, and Kelly is the most fun to watch I've seen.

I prefer atheticism over finiky technical brilliance, and imagination over style.

I could watch the guy all night. Here's hoping they run it again.

When I'm forced to admit I'm from back East

2007-03-03T21:15:00.000-07:00

This is one of those days. I am desperately missing the look/smell/aspects of early spring as I experienced it years ago.

The oddly sharp green and deep brown that a deciduous forest has in the middle of a long drizzle....newly turned earth in the backyard mini-garden.

Any stone fountains or decorations in the middle of such a place, slick and darker than usual due to water...unlike the high desert, Deity is profligate with water during any spring in my home state...

Though not currently prone to assign much value to astrological signs, I know I'm a water sign....I miss the lakes and oceans...

There is Lake Dillon here...but I'm too far to go..and I am biased enough that I don't call it a lake anyway...

More on Acting

2007-03-03T17:27:00.000-07:00

This isn't another theater post, much as I wish it was.

The latest manifestation of my wrestle with depression sometimes frightens me.

First...I've discussed this rationally with some family, and they've narrowed it down some...so I'm not afraid of any public meltdowns.

But...very specifically.

Anxiety, which has been the main manifestation that I've dealt with since 2004 is popping up at some rather difficult times.

When I'm at work, surprisingly, I'm ok. Because I'm busy and distracted, and *I'm not physically by myself.* When other people, clients, co-worker's, friends are with me I'm the person most people who know me offline would recognize. Sort of the opposite of social anxiety disorder.

Also, at times when I *expect* to be alone in the apartment (roomate at work, or out etc.) I'm cool. Also, since paratransit trips have become the "norm" I no longer freak out while waiting for transport. That used to be a problem, and isn't now.

But, when someone is supposed to be here and isn't, or takes longer about returning than I judge they should....

Sudden abject, emotional level of a two year old terror. I'm alone. No one's coming to help me...If the roomate is suddenly *gone* how will I get to work? Did they have an asthma attack? Are they in the hospital? etc etc ad nauseaum. *I'm* tired of it. It's old. And I know the roomate/pca is tired of it too.

I have this whole control freak thing going about *how long* an unexpected event will last. And if I'm in public when this happens...I start acting. It's all I can do. Project the image that everything is fine and hold out for that point when the universe will right itself and I will no longer percieve myself as stranded or abandoned (Remember, this isn't rational stuff and I'm not trying to say it is.)

I have benefits beginning in May. This will be addressed, and I'm doing many non-medicinal things to fight these types of terrors.

What I hate the most is that I recognize the beginning of this controlling, scheduled, obsessive have-to-know-what comes next.

I don't want to follow in the footsteps of [several] family members who have gone down this road.

Medical Model, Social Model and betwixt and between

2007-03-03T10:26:00.000-07:00

I apologize in advance to those that read this space who are firmly and completely in the "Social Model of Disability" camp.

I just can't wrestle this all the way to the ground and feel comfortable with it...

First, the good side:

I believe society and attitudes should *not* constitute a level of isolation and barrier so great that it is greater than the impairment itself.

I do.

I also believe there are many many people who, in order to force society to treat them as people first, with the respect and dignity everyone, able or not deserves, say "My impairment is an integral part of me, and I would not be "me" without it, so I and my impairment are fine just the way we are..."and that is truly the case for them...

But, I'm sorry. This is where in my real day to day existence, the wheels fall off that wagon for me. Much of the time, this sounds like my therapist talking to me back in the late eighties, when I came to realize, that conventional therapy tries for a positive outcome by changing the client's "perception" of the physical/emotional difficulties I was going through...

"Things are never universally 'bad' or 'good' it's all in the way you percieve them."

I'm sorry.

BULLSHIT!

And, in the haste to avoid the 'victim' label, or to make sure to disabuse the world of the notion that doctors are all knowing and that no one should assume they or any other caregivers have our best interests at heart, *any* medical intervention that might be a positive seems to be scorned. (I'm not talking Ashley. I'm talking medicines, common surgeries, and cool tech.).

So I'm stuck. The social model of disability is what I *want* to be true for me, as for others.

Because that means that physical and social barriers have a hope of coming down.

I'm not a victim.

But...without medical intervention I would not be able to work or socialize or be further down on the depression/anxiety rollercoaster than I am right now. I'm not about to say, "Me and my impairments we're fine with each other so fork over the necessary dignity and respect." Instead, I'll say: "Give me some dignity and respect, dammit and right now, so that I can better bear the phyisical and emotional costs of my impairments."

Because I won't mealymouth around and say that none of my impairments hurt me, hinder me, piss me off, and force me into several difficult workarounds or prioritizations. They do cost me. Every goddammed day.

So someone well versed in the social model....explain to me how I get to a point that to be a true example of the social model *all* of my various impairments are really not the problem, that society is...

I can chime in with a yes for cerebral palsy and the carpal tunnel. They are not in the 'hindrance' category for me these days.

And, asthma is just an annoying pain in the ***.

But the other two. I'm not fine with, and cannot dismiss them and say "You see? It's solely the ramp I need and the decent socialization that society learns about when they decide to treat us as people....those are my only real problems..."

I'm just unable to do that. So the whole theory seems to turn sour in my head.

I'm not opposed to that view. I just don't see how I can ever get there....

Cruel and Unusual Punishment

2007-03-03T10:18:00.000-07:00

Since when does smart+autistic=solitary confinement...? ....I'm not arguing that a crime exists. But this is using his ability and impairment to discriminate against him....

The narrow space between Supercripdom and Helplessness

2007-02-27T19:59:00.000-07:00

Note: I have nothing at all bad to say about my work. It's simply the nature of the business that it is busy, high volume stuff.

But add that to the Tooth That Must Be Pulled. and one finds oneself in need of stress reduction.

So, here's my physically lazy Stress Reduction list. If one finds oneself opposite my tastes or politics then I encourage you to adapt as needed.

1. Watch "Gene Gene The Dancing Machine" on YouTube.

2. Listen to your music of choice. Mine tonight is Rhapsody In Blue

3. Watch Countdown on MSNBC

4. Daily Show, on Comedy Central same notation.

5. Exercise tape for 20 minutes in the privacy of my own home where no one sees me look that stupid.

6. Menu Plan

7. Garden (I don't but several friends do)

8. Reorder your to do list to get the one you hate out of the way first.

9. Email a friend or family member who hasn't heard from you in awhile.

10. Figure out which Congressperson to write/call next about [insert issue of concern here].

Testing,Testing 123

2007-02-27T19:45:00.000-07:00

Tomorow and Thursday I'll do something I'm still remarkably good at: Listening to a lecture and then taking tests.

I wish it was a legal job to just take tests.

All day long.

I'd be a millionaire.

If I listed it as a job skill...."Can absorb a significant quantity of information just by listening, and then be tested for proof thereof."
...too bad there isn't a Bureau of Tests.

Paratransit Parables #4

2007-02-27T19:40:00.000-07:00

I love when these folks collude together, the dispatchers and the drivers...tonight, someone thought the CDOT office was my workplace. It is not, it never has been, but they swore the bus should be right infron of my nose.

It wasn't.

The driver did find me after a bit more information was exchanged...and he felt bad about it...

and then, while getting me off the ramp...pulled apart one of the smaller front wheels of my chair.

It's repairable, fairly easily...

Why do those with impairments need a "luxury item" like a cell phone? So they can limit the amount of miscommunication between themselves, their drivers, and the driver's home base.

The skin of my teeth

2007-02-23T19:19:00.000-07:00

First an apology for my absence, but you'll see as this blog entry continues the reason(s) why.

Tuesday night a bad tooth began to hurt a bit...I had hoped it would hold out until I get dental in May, but not so...

By Wednesday my face was beginning to swell...by thursday...the whole side was puffed up and tender...

My dentist from last year no longer works at the practice I used, so I'm between dentists.

I saw an oral surgeon this am.
He at least promptly agreed to a scrip for antibiotics and vicodin, and I'm set to have the tooth pulled next Friday.

No comp time, sick time, anything available yet, so I worked most of today and will work all next week and half of Friday.

They can't pull the tooth for a week because the infection must be brought down.

While I have medical insurance until 2 28 07, it won't handle this...

I know people are tiring of "she only writes when she's angry." thing. Too bad.

Money from a tax refund that was going to go to car repair, will now need to be siphoned off to this oral surgeon.

But the cost....*this* is the cost of the low utilization either forced by poverty or expected by the dental coverage I had, that paid big for preventive screenings and had large copays for the heavy stuff. I'll admit that before 2004 my food choices were a contributing factor, but, the underlying thing that *makes my teeth brittle even after megadoses of calcium* is the chemo I had and that I had no choice but to take.

I kept my game face on the phone and then immediately started weeping from the pain once I logged off the phone tonight at 5:30, even with the antibiotics and the vicodin.

Antibiotics also interact badly with my existing gut trouble.

God Damn It. Things were just straightening out. I want to yank Deity by its designer tie, and *bring the face of the almighty right down to my wheelchairbound eye level* and say:

"Yeah, I know that I peeved you out with all my late 80's/early 90's whining, and that was worse than this...but for [insert curse word of choice here] sake, can I have a moment to settle down before the next piece of my body decides to blow up!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!?"

I think the problem with Deity answering prayers is that, depending on one's belief system, God has either last been human 2000 or so years ago, or *never* made the trip down here to understand the physical breakdown of the human form from God's own experience.

And, I hope God does not send me the Dalai Lama,The Pope, St. Paul, (whom I still view as a bitter, attention seeking religious extremist), or any megachurch pastor, to comfort me in my time of serious pain, because I'd probably deck them, scream at them and *shoot them* in my present state of mind.

The vicodin is kicking in....

And, once the oral surgeon's work is complete, there will be another interesting blog entry. Yes indeedy. But I want the work done before I opinionate on a few things...

Feeling Useful

2007-02-20T19:06:00.000-07:00

It's amazing how much of the "capable PWD" that one absorbs over time...sometimes that works at cross purposes with what you are actually able to do at any given moment.

I'm the more minimalist at housekeeping and kitchen work in my household, so the other things that I can do, I'm actually a bit too fierce about.

The roomate asked me, knowing my tendency for disorganized chaos if she should be put in charge of tracking our (few) joint bills, but I said no...

I rather enjoy paying them online, with the need for checks dwindling down to three or four a month at most.

She argues about the way I fill the dishwasher, but leaves the task to me as one of the few that I can handle in the open but incorrectly constructed "accessible" kitchen. (Counters and stove tops are too high, left at "normal," while the refrigerator and the dishwasher benefit from the opened up floorplan)

I miss cooking, rendered futile by not being able to see what's in the pan, or saucepan...(or stand up above it and figure it by smells and sounds as my visually impaired friend who is a chef's daughter does.)

I used to make decent omeletes and stir fry, and the occasional burger....

An Unexpected Valentine...

2007-02-14T21:19:00.000-07:00

This evening, my paratransit driver said: "We know you're beautiful because God didn't make any ugly women."

There it is. A fait accompli by Deity. All women are beautiful.

With apologies to anyone wary of references to a higher power.
This was the quote of the day to me. I loved it. I have not, nor do I intend to engage in overanalysis of the comment. There is no shame in admitting that sometimes we need to hear the word "beautiful" applied to us, especially if our beauty is of the non-standard sort.

Happy Valentine's day to all those beautiful women, (and men) out there.

More on "Moral Hazard" and a "Health Care Plan" of the present Administration

2007-02-13T20:11:00.000-07:00

I apologize in advance for this post. I really do. But I feel like I have to explain some things to the Persons in Charge of our president's plan to alter the health care system by the beginning of 2009.

First, I'm not going to reinvent the wheel, there's a good discussion of the plan here, that outlines it's implications.

This is the particular idea that I find amazingly offensive whenever it is discussed. And it never matters who is doing the discoursing. When I hear that term "Moral Hazard" (they don't use it directly in the linked discussion but it is all over their policy) I completely lose my mind. I am on the way to being a screaming Tasmainian Devil.

In short "Moral Hazard" means that economists or policy makers who buy into "Moral Hazard" believe that we use health insurance like candy or gum, consuming a vast amount of unecessary health care dollars because we're greedy or lazy or indifferent to the cost of the coverage we enjoy.

I believe that is one of the five biggest crocks ever sold to the American public.

To, (as usual) use my personal examples.

I have never had a "frivolous" test in my life. Every lab work or other diagnostic test was necessary to combat whatever was going on with me at the moment up to and including cancer.

The folks telling us about the new plan literally say we "consume" health care dollars without being aware of the cost versus the benefit.

We are concerned about our well-being. That is why we see physicians, go to the emergency room, have surgery. We "consume" health care when it is *necessary* to do so. It's not some fluffy luxury like too many shoes or IPODS, sweaters, or travel out of town. If we're to continue to exist, it's necessary to "consume" some health care. Why this country treats it like an option we could do without if we chose, rather than a vital cog in anyone's ability to get up in the morning is beyond me.

I did do the right thing and go to doctor visits every three months or so and avoided expensive testing...all through the spring, summer and fall of 1990, for example. They found out I had asthma, but that was a simple test. Not very expensive at all. But you know, I was so fatigued, anemic, feverish and feeling odd by February of 1991 that the doctor's (finally!) surmized I might have cancer.

What *stage* was the Hodgkins in when they finally diagnosed it??????????????

Well, stage 4 means you're basically terminal with no hope. I was one stage down from that.

3B...but I'd avoided all those frivolous tests! I'd done the right thing for the free market! I was a low utilizer.

The heavy artillery chemo that was necessary so I might survive left me with consolation prizes I deal with to this day. Bad bone density, cracked and missing teeth, the gut trouble....

I cost them much more than an earlier biopsy and discovery of this cancer would ever have done.

But, the Moral Hazard lovers want everyone to simply see their primary care doc every three to six months (or once a year if you're shockingly healthy) and not require the system to give them any outpatient surgery, rehab, scans, diagnostic testing or god forbid hospital stays. I could lose coverage or be handed much less in 2009 if the present plan goes through.

They want us all to pay for an individual plan out of pocket, and not through work, up to 7,500 a year (15,000 a year for families that we would get back as a 'tax credit.' I don't know about the rest of you, but I don't have an extra 625.00 /1250.00 a month to pay for it in advance, and the budget cannot be tweaked enough to make it so.

I'm shaking and spitting at the keyboard...

This is just nuts.

Monday Monday

2007-02-12T18:31:00.000-07:00

Cold, suddenly at 4:30 more S-N-O-W due this evening...

Brr

Apologies to those who read via rss

2007-02-12T18:29:00.000-07:00

you'll be seeing a lot of old posts run through the aggregator, I'm trying to label the posts that originated in the old blogger...

The road not offered...

2007-02-10T17:29:00.000-07:00

I don't even know if this is normative ("normal") behavior so I'm having more trouble than I ought to with something. I think it grows out of the "raised in an alchoholic household=uncertain of boundaries" thing.

A great friend, who I am blessed with keeps in touch regularly, because, well, he's just that kind of a guy. I just got off the phone with him. And I am unfortunately, wrestling down some unproductive emotion. It is a very very rare event these days, but it stil happens now and again.

The setup of our relationship has been clear for *decades.* And the rational old hag sitting in front of this computer would never want it to change now. I have this discussion inside my head about relationships "Remember your husband? Well, not because he wanted to be or anything, but he's Permanently Gone. And remember TheMostEvilDisabledManAlive? He earned the title, but you gave new meaning to KickingAManWhenHe'sDown in verbal retribution...Do you really want to wish for a "relationship" again, just to be rejected *again!* All done carefully and with mercy because that's who the Longtime Friend is? And *then* you revert to bitterness and vengeance against someone who will *never* wrong you?!!! No! So...

What do I do with those ancient feelings that only rarely surface?

Slap them into a box and put them somewhere in my head so they don't threaten the settled contentment of our present friendship by making me look pathetic or desperate, even when I'm not.

But.

They exist.

Even though I could *never* share space with this person because we would drive each other batshit crazy in the space of a month...

(maybe a week.)

I did love him. (I know the difference between a crush and love. It was love.)

I do love him.

I will always love him.

And he never loved me romantically.

But I grow and learn from his friendship so much that I cannot afford to lose that by contiuing to drag out the emotions that he would only have to refuse.

Thank God he's my friend. Not too many lost loves manage that.

It is not tragic, because we aren't lost to one another.

Currently, there is no pining. I'm not the sort to pine. Any actual pining ended in 1985 when Future Husband showed up.

I just wish the old stuff wouldn't do it's JackInTheBox routine.

It's unsettling.

Paratransit Parables #3

2007-02-10T13:13:00.000-07:00

Back in the city where I grew up, they are busy narrowing the scope of "disability" [read "impairment"] to save money on paratransit.

Applicants with "less visible" disabilities will be tested for both cognitive and physical disabilities with an eye towards what a health insurance company usually calls 'cost avoidance' and means more isolation, dependence and 'dissapearance' of people with impairment.

So when you hear of Medicaid and Medicare cuts, understand that ancillary services will pick up on this style of cutting and employ it as well.

Food stamps.

Private companies that train PCA's and companions similarly to the government programs.

Paratransit

Phone bill and Heat bill assistance programs will also tighten their income eligibility requirements.

And even though customers in the town where I grew up only pay 1.50 per trip unlike the 3.00 per trip fare here in Denver, the Cleveland Ohio RTA transit figures that paying 55 to 75 an applicant to screen them out is money well spent.

That means, in the long term, an increase in physical and mental health costs shoved off onto the county hospital, Metro, that provides indigent care, and other doctor and hospital costs will go up too, for those still lucky enough to be on Medicaid or Medicare, because they've been told they *aren't* disabled enough to get to the doctor they need to see...then perhaps when these other problems that crop up because they couldn't travel to the physician to deal with them, *then* they'll get retested, get approved and get back on....

Those who do manage to use it to get to a job, may lose that job and then...

Sigh.

I don't approve of the abuse of any system. But if "less than half" are going to be tested...and half of those are declined...it will throw out enough people that need the service that will be at the end of their resources to simply leave the house...

Collateral Damage

2007-02-09T22:07:00.000-07:00

I submit that there's a part of the war story that the MSM is not chewing on: The number of veterans partially or totally disabled by the wars we've [initiated?] [blown up?] [created?] [brewed?]

Before we even get to Iran, there are some sobering numbers out there even beyond the 3100 American lives lost...The nearly one-in-five that will come home with significant impairment.

And, socially, they'll get forced in to the saint/martyr role, perhaps even more than civilian gimps do, because they've served their country. No human failings permitted when they come home with their life extremely altered. No commonsense studying the social model of disability...The medical model makes it easier for others to use the situation of the impaired soldier, not to actually help that soldier or their family, but advance their own agenda, for or against the war.

And, once impaired, will they be:

Dissed by doctors?

Short on dates?

Become slowly "invisible" because so many do not see the impaired at all?

Denied work, socialization, religious observance because of architechtural barriers?

Or, perhaps a new unlooked for force to press for the rights of all with impairments...?

When counting the costs of the war (s) past, present, future, do not leave the impaired veteran out of the equation...

I loathe soy milk

2007-02-08T20:43:00.000-07:00

Soy bars, soy powder,

But have you ever *had* to use something because it helped you, and yet *hated* the very sight of it?

It makes sure I get enough protein every day while living on soy, low sodium V8 and a frozen dinner, from Sunday's after noon until Friday night when I get into the house. Then, for the weekend regular food in normal amounts.

This is what my impairments demand, if I am to stay employed. So I do it.

But I don't have to like it.

Lewis Black, the comedian has a great rant about soy milk. I say it in my head every day while I'm mixing powder and soy milk.