Sudden shift in the PCA Paradigm

August 18, 2007 at 4:29 PM (Assistive Technology, Caregivers, Employment)

The roomate, stressed to an insane limit by the Denver blizzards this last winter (having to work ten and twelve hour shifts in an industry that’s transportation related)

….Took up smoking during those blizzards… after a ten year hiatus.  They already have  severe asthma.  Roomate quit in July again….

The roomate has been the de facto PCA around imfunnytoo’s house for the last seven or so years….

A sudden, drastic reduction in their lung function means that the things that are beyond me, are now (mostly) beyond them as well…so I’m going to have to fork up for cleaning (which is fine)

and figure out a way to do laundry myself…(which due to layout of the place can prove a bit much.)

Could be temporary, could be permanent.

I’m in that place that a lot of people with impairments with jobs also find themselves…Income too high to get a paid pca, …

The roomate on oxygen 24/7 can still work, and still drive (yay.) But that’s about it.

Can’t move out of this place until 2008 in August…(for something smaller and slightly less expensive)

Not a sympathy grabber.  I’m just trying to figure out
how to handle this…

Well, actually no.  I’ll rant a minute.

Conservatives *want* us to work.  They would rather not fork up for impairments if at all possible. (I mean good grief, they aren’t even really paying for what’s needed for the physical and mental struggles  of the soldiers *they* sent to Iraq, )

so the rest of us who have impairments that have nothing to do with the cost of doing business, I mean um, fighting a war…  We’re really in the soup.

But those things that would *support* the continuation of working…that would help the ones that *have* jobs keep them, as well as help those who are seeking to work find some

….Exist for the rich who can have a *staff* (even the “upper middle class” have “someone come in” to housekeep sometimes…

And if you’re on disability, programs exist on paper, but can be incredibly difficult to maintain and are subject to abuses, theft of your stuff…pca’s that are stupid, neglectful or downright dangerous….

There’s never been a good answer.

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Shafted, or Elevatorial Misconduct Part II

July 25, 2007 at 7:23 PM (Employment) (, )

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.

And instead:

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 9/11

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.

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Well, I’ve been ergonomicked…

July 24, 2007 at 6:25 PM (Employment)

None of my other employers post ADA did an ergonomic makeover of my workspace as intensive as this has been…

Now shelves, computer screen are level with the reach of my arms and my line of sight…and other rests and technology are in the ‘correct” spot. I’m hoping that this increases my efficency and also speed of process…while being a *huge* amount more comfortable…

We shall see. The first hour and a half of use seemed pretty good…

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How to talk about work without talking

June 26, 2007 at 8:06 PM (Employment)

about work…

The comfort is, I know many people, able and not, that have these sorts of gripes…

First, I’m quite grateful to have my job…

Second, it is stressful, but the stress is what I consider to be an acceptable and “common” level of stress.

Third, I’ve got steady, professional co workers.  Very little “office drama”

And I’m going to try and explain this without sounding like an egotistical nut….

Between my impairments and the narrow amount of stuff that I’m “good at”

I’m probably going to be permanently irritated for the rest of my life that none of the things I can do really well will actually pay me any money…

and, as I age, I also have fewer things, payable or not, that I’m good at…

I’m “just by the skin of my teeth good enough” at particular things to try and hold this job….that’s a good thing…

The things I *am* good at are just so different…
I put this feeling in a box and don’t let it color my work life if at all possible…

Because of physical issues I have now, that I didn’t have 25 years ago…

They mean that public performance, public instruction or teaching are out as well…

Singing has faded, because it’s tougher at higher altitudes…

And this sounds so much like a whiney-*** b!tch fest,

I’d best just put my back into it, work, collect the paycheck and zip it.

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No middle ground.

June 23, 2007 at 4:03 PM (Abuse by Caregivers, Caregivers, Education, Employment, Rights) (, , )

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…

Or… Expensive?

(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.

*Why* *Not*?

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