Friday, August 08, 2008

Small Triumph, Recoup

Today for the first time since February, I took a shower on my own.

Shame on the idiots that limited my independence with theit incompetence and penny pinching.

The shower cost me more than pride on indepedence, it cost and will continure to cost time.
I've spent about $1,000 on health aide time and $600 on a shower wheelchair.
They spent abou t $600 having the lip on the shower, eradicated,

It took me about 2 hours to do it.... the shower itself was 20 minutes, but the transfer from one wheelchair
to another and back again, plus the cleanup of water.... sigh, argh!!!!

My shower wheelchair barely fits in the shower and so the water pours out the bathroom, down the hall and into the kitchen. This is a good half hour cleanup, though i strategically placed towels in the hall.

While maneuvering wheelchair close and away from the bed is nervewracking, It is much less uncertain than the slide across the shower bench transfer.

I had asked first that they just tile a space and i was told that was too expensive. This too narrow shower is based on someone standing, as it's "inside" is not as wide as the wheel, the wheelchair sits on the what was (prior to amendment) the raised edge of the shower stall.

I will try not to think about this much anymore. This accomplishment frees me from the hostile incompetence
of the Home Health Service. No more being awakened at unexpected timed, nor having to get up earlier than i want to await someone to basically watch me and not clean up. No more paying for that stress and inconsistency.

No if i could only shop, I could free myself from the "homemaking" expense, too. I have hope. I got a letter
that my county legislature is working on it. If there were a car service with a small van of lift fitted SUV,
all would be solved and it would be better than a municiple bus service, but as it now stands, I have nothing....

Tuesday, August 05, 2008

Lack of Transportation

As Rochester discusses REDUCING the fares for the disabled, I, in this small city, have no transportation UNLESS
I am going to the the doctor.

How can this be, as busses with lifts rumble past my house nearly daily?

Hopefully where there is a will, there is a way.

Somehow, the local center for the disabled has not seen fit to make this happen. School buses could help in the off hours, the Founders Pavilion buses could help, the Pathways buses could help and the CEATS--- Corning Erwin Area Transportation, could help. But thus far they don't. Why in a place with few sidewalks, they won't help you over the rough terrain, beats me.

In the city of Rochester, where the sidewalks were comparatively smooth, they would help you over the rough patches. Here where such help is needed, that help is not available.

In the city of Rochester where the distances were multiples of the distances here, I could go for a pittance.
Here the "real cost" to go for my 2 mile trips is $27.50!!!! In Rochester this cost $1.75.

I am tired of being BLAMED for what SHOULD exist, what should be available. When the rest of the civilized world
offer some options.

Help me, Lord, Help me.


The quadriplegic man, newly made the head of Advocacy for the local Center for Independent Living, tells me he will have the girl who took the notes at the last meeting e-mail them to me. 

I've called him five times trying to get information on the recently formed action group, that another of his colleagues had suggested I attend.

I had to ask for minutes of the meeting as he seemed unable to say what they discussed or were working on, other than assuring that curb cuts would be shoveled on Market Street, come winter. 

The girl? i repeat with a question in my voice, is she a teenager interning there? I ask. 

No, he says, i've known her for years.
Then I don't think she's a girl!, i say and sigh, 
and he repeats that he's known her for a long time as if this is either excuse or explanation. 

Embarrassed, he repeats everything he's just told me,
twice,but faster, brighter as if to erase the bad vibe he has left. 

Nevermind his postion, Advocacy, or that his organization just had a week-long retreat where everyone was trained in some sort of sensitivity or client outreach. 
Or, heaven forfend, that his own unique challenges might make him acutely aware of such diminutions. 

No, he was still a male and the female, who could both take notes and transmit the information 
was a "girl".