Via the Washington Post:
While anything else at all is still speculation and “alleged,”
There is no doubt that a young girl with disabilities is dead and her body parts scattered.
It is a profound violation whenever it happened and how it happened and whomever did it.
On discouraging dark days, which this has been…I feel like the invisible “vulnerable” tag that many of us seem to wear will never come off…that we are seen as prey for the unbalanced to use….or the accountants to target, as below…
And, via cable news
Poor people with chronic illness whose transplants are too expensive to pay for…98 Arizonians who have committed the cardinal sin of becoming poor and qualifying for Medicaid/Access… waiting on the transplant list have been completely cut off, in one case just as the patient was being prepped for surgery… If those patients do not get those transplants they will die, leaving wives and children behind. A true ‘death panel.’ stemming from legislation passed earlier this year.
We deserve to be safe in our own homes. We deserve to have every chance to have more birthdays, that a transplant or other life saving procedure would give to us. My cousin was a Medicaid eligible transplant recipient, and that transplant very nearly changed her back (on the inside) to the merry person I had met when I was 15. No longer the desperately ill, despairing, stretched beyond her limits person she had been for six years prior to the transplant.
Making sacrifices for our country’s economic health is something we should all do…but partial cuts in service, not eliminations…lose part, rather than the whole…
But no state in this country should require it’s citizens to die, so that a budget may get balanced.
Let me get this straight. 98 poor people should die that will save 4 million, (roughly 40k for each person whose transplant was denied)…and by the way the wealthiest among us need an extension of a tax cut they agreed to end at this time when it was put into place.
D@mmit! Stop it people! Stop!
On the eve of the anniversary of the passage of the ADA:
I could do some smarmy inspirational riff…and I’ll *almost* commit that very sin by saying…
I absolutely know I’m blessed to have a job and be keeping it…all those stats about the 70% unemployment rate for people with impairments have been staring me in the cranium since 2004 when I started paying attention.
So yep. Happy about that.
Or, I could be grim about:
Those with impairments still not in the community, let alone working at a paying job.
The numbers of vets with impairments continue to grow…
More and more families that have a family member with impairments are facing poverty and economic disaster.
The many interviews that I *know* I’ve not succeeded at because of my size and/or impairment.
The *societal ignorance*, that willful denial of the fact that those with disabilities are able and willing to give of their time and their gifts in job or volunteering opportunites, and it is the *attitudes* of those filling the positions, that keep many out of work.
But I’m going to skip the sappy inspirational kitsch, as well as the grim listing.
The ADA was passed:
Before Bill Clinton became President.
Before the Family Medical Leave act.
Before protease inhibitors changed HIV treatment
Before the Oklahoma City bombing.
Before “The West Wing” had it’s first episode.
Before the Y2K scare.
Before the Supreme Court examined the 2000 election and made it’s ruling.
Before the Iraq war.
And there are still *medical facilities* that are inacessible.
Many builders wilfully disregard Universal Design in new construction when it would work quite well
Businesses still wait to be sued before they comply.
Courts have begun to narrow the focus of the ADA so that someone can be legally and correctly ruled too disabled to do a job but be denied any recourse because they aren’t disabled enough to seek redress under ADA.
And, since it’s always about mememememe on this blog…
My apartment complex that I’ve lived in since 1999 loves to collect my rent. Understandably so. But they’re missing a point.
In order to continue to meet my obligations I have to keep my job. In order to keep my job…doesn’t it stand to reason that I would have to be able to *get* to my job? (my job description doesn’t allow for telecommuting)
In order to get to this job…I must leave my apartment building.
*Which* as it turns out may be up for grabs *again* tomorow because the elevator is not working.
Of course I could live on the ground floor…I could move. And after three of these elevator foulups in two months I have *asked* that I be allowed to do so. Why *no!* the apartment says…you cannot break your lease between lease terms to live in a less expensive apartment….
Um, wait. If I cannot leave the apartment, and cannot continue my job I will be *unable* to pay the rest of the lease on this place…
I cannot break the lease and move to another complex for the same reason….the lease ends in September of 2008.
I think I’m going to have to offer to pay the two bedroom price on a one bedroom downstairs…and then leave at the end of the lease…
All because the elevator cannot be mended.
“Access” to buildings and jobs is still a relative term more than 25 years after the passage of the ADA…
*Enforce* it already.
[Curseword of choice] it all…
I’m going to bed.
It was a beautiful sunny day, and I was rolling through a parking lot…got a wiff of full dumpster, because of *course* the only accessible route into a building simply *must * be next to the dumpster….but except for the dumpster…a fairly *empty* parking lot…lots of non-blue-non gimp parking spaces available and some of them right across from the doorway I was aiming for….but instead of taking advantage of the nearly empty lot. DumbDude was parked across *three* disabled parking spaces loading and unloading his car…also happened to be over the ramp that I would need when the paratransit van made its appearance….
I rolled up and said “Excuse me…?”
“Need some help?” All just cheery as can be…
“No, but actually you’re…”
And then the dusty lightbulb in his third attic up sputtered to life and he really *looked* at me and said….. “Oh…” <three long beats> “I’ll…” <three long beats…> And then he fled to his car, moved it to one of the regular spaces across from the door and continued his loading/unloading… without another word.
Note to the able:
The blue spaces, the ramps, the braille buttons, the large public restroom cubicles, the curb cuts…the electric doors.
I really realize the concept is going to be difficult to wrap your heads around…but….
We Get First Dibs On Those!
Opening Thesis: (Going back to a little middle school paper writing structure to make the ideas come more easily out of my recovering head):
Everybody has a window of competence.
That window may include simple things like eating, drinking, rolling over…listening or smiling…
Or it may include genius level work in the sciences, arts,academics…
And every step in between….
So, if everybody has a window of competence…If that is a valid idea…
How about an some additional “rights”!
See, this makes people nervous…
“Can’t go adding rights…or taking them away…that’s UnAmerican, or uncouth or unconstitutional…or…
(Oh, I’m sorry, did I say that? Did I actually imply tht a society that maximizes it’s members potential could *cost money?* I guess I did. How gauche of me.)
I just believe that *everybody* has a right to
1. Have help discovering what their competencies are.
2. Have help trying to expand or diversify those things.
3. And have help attempting morphing their favorite skills or activities into something self supporting, or failing that, have help finding a competency that might lead to self support even it’s not their favorite thing in the world.
4. And if that is never possible, or, if they’ve attempted and come around to find that the pieces of their competencies are just not things they can get paid for….acknowledgment that ‘quality of life’ is also something everybody has a right to help with…
I’m woolgathering a bit…
The able need a label, either something they can assign arbitrarily and hide their own fear of becoming impaired behind it…or something that they can draw from the resources of their profession. (The ‘medicalized’ labels)
A disquieting trend in medicine appears to consider and allow those with cognitive impairment as ‘subjects’ to perform procedures on…of course, informed consent is never sought and so never recieved, because the medicalized subtext of “cognitive impairment” implies inability to give *or withhold* consent…. and now even “fair game for trials, tests…”
And, the incapacity can be very brief, in other words an unconsicous patient in some ER’s around the country could find themselves as part of a trial…to study the effects of accidental trauma…
Cognitive impairment is not a free pass for…so called, study.
I always thought the goals of the teachers that I saw working with students with cognitive impairment (even in the big, bad 1960’s and 1970’s), was to find their window of competence and support, expand and develop it, not just so they could have a shot at being productive, [God I hate that word] but to assist the children and their advocates or parents in a positive manner to give the person a more varied tapestry of events and competencies in life…to challenge them yes, but not as a set up for failure…
Before anyone calls me naieve, I know much more now about the horrid disinterest, indifference, imprisonment, and abuses that happen when a child or adult with cognitive impairment is misdiagnosed and also neglected.
That part of my sojourn in the blogosphere has been quite the education …
And the part that gets my grey matter all knotted up is that those who want to perform these studies, tests, trials, treatments…they *believe* they are on the side of the *Good Caregivers* and not the horrible gone wrong abuses.
Is everyone in the US a person?* Yes.
Do those with impairments all have access to the same rights? No.
And so, I’m calling people…money means more and more these days…
Since I’ve previously missed appointments with both of the people I’m trying to contact…they’ll see me but they are certainly making sure that I don’t forget to bring money to the party…
They aren’t acting evil…as a matter of fact they have been decent…
I’m easily saddened these days certainly…but.
I have an idea what would happen to someone at my particular crossroads who didn’t have the initiall $$$$$ to pay my portion….
and the follow up $$$ to maintain contact with a therapist…and the money for the outpatient physical procedure that will probably have to be handled in January 08.
I don’t think I’m violating any written agreements not to speak ill of several private health insurers who were previous (not present) employers…when I say…
How in the hell did we get to medical care as a privilege?
It’s more nuts than me, and right now I’m fairly nuts.