So after hustling, calling getting annoyed, rehearsing, writing and rewriting a new work, practicing, rehearsing it, creating a "set", getting a friend to bring my drummer back and forth to me --30 mile drives; the drummer himself, borrowing drums, arranging for sound and photography, shopping for clothes for the gig; researching and calling and finally finding very expensive transportation ($75), crafting and sending bios and pix; creating materials to hand out; printing brochures ----
We can't perform, because the Community Arts Center, removed its ramp and did not replace it. How could a Community Arts Center be considered a COMMUNITY anything and remain inaccessible?!!!
ARGHHHHHHH!
After a year of countless phone calls, numerous letters and battling REFUSAL, the City Manager and someone from the police is coming to meet with me to RE-ASSESS why i want a handicapped parking sign in front of my house so that I might possibly have access to the front of my house. I was refused because "there's plenty of parking" in my neighborhood. Exactly I said, so why does some idiot park right in front of my house, blocking the one bit of concrete that breaks the untraversable grassy median, the one bit directly in front of my house and RAMP, when there is plenty of parking everywhere else, when every house has a driveway or alley access. I don't need to park, I need ACCESS.
ARGHHHHHHH!
After a year and half of battling to get my ramps made accessible, to meet ADA standards, after one agency after another said they couldn't do anything. And then finding an agency to help. And then having the bad ramp company refuse to sell their contractor another ramp section to make at least one of my ramps easy to use..... last week, I looked outside my door and there was a hunk of ramp in my driveway. I tried to reach the contractor and the agency. A long 24 hours later i reached the agency person ( my own counselor having retired and his replacement having fallen ill), my third person in 18 months, said o! i didn't expect it so soon. So you knew it was coming ? I just found out about it yesterday. Sigh. Had i known it was coming, I would have asked that it be left in a more protected place, a less visible place.... why is it that the least skilled at communication or kindness are these folks in Social and Human Services?
I got a letter saying that my turn had come up for weatherization and giving me a very tight deadline ---two weeks-- to get it done. I called immediately. They want me to come in to their office in the county's seat--- about 35 miles away. I can't I said, I'm paralyzed and in a wheelchair. Can't someone bring me? I know no one with a lift in their car and there is no transportation. They want bank records and all sorts of personal information. Can't someone bring it in for you? Well why can't I do it over the phone? Because someone has to come in. But if that person isn't me, why can't i do it over the phone and send you all the information. You exist to help me, or people like me... I mean if I could get up and walk, I wouldn't need your help,I would weatherize my home myself, ( as I had in the past!!!)
but I'm paralyzed and in wheelchair in a Corning, NY which has no paratransit and you know there is no paratransit here......
ARGHHHHHHHHHHHHHH!
Tuesday, June 09, 2009
Sunday, May 24, 2009
Insult to Injury, Salt in the /wound
A year and half of difficulty. One ramp is unnavigable the other barely so. But another agency said it would fix what the first wouldn't. Then to find out that the perfidious supplier, REFUSED to sell the contractor the an additional piece
to fix my ramp..... this is INSANE! and WRONG.
IT took MONTHS to get a THIRD agency to measure and say hey, this doesn't meet ADA standard... which is deep.. it still might have been hard for me and needed adjustment but that it didn't meet GENERAL standards, after months of insults about my inability to do/use it!
Here's the letter I sent. I've lived a year in not enough, not done right. All that is is left is prayer, now... a lottery win, healing... or maybe the better business bureau will help.
to fix my ramp..... this is INSANE! and WRONG.
IT took MONTHS to get a THIRD agency to measure and say hey, this doesn't meet ADA standard... which is deep.. it still might have been hard for me and needed adjustment but that it didn't meet GENERAL standards, after months of insults about my inability to do/use it!
Here's the letter I sent. I've lived a year in not enough, not done right. All that is is left is prayer, now... a lottery win, healing... or maybe the better business bureau will help.
Arbor Development selected Pyramid Ramps Inc to install ramps on my home. Neither of the two ramps installed by Pyramid Ramps, Inc. for wheelchair access to my home met ADA standards. This was assessed and confirmed by AIM.
Both were too steep. One was installed half on concrete and half in dirt and began to sink. Both had wood that warped. After months of requests, one ramp was moved to be put on sidewalk, but still was not centered. The other was extended. After months of begging, they were finally bolted/nailed to manage the wild and un-navigable warping that occurred after every rain. Both are still too steep and still don't meet ADA standards.
Another contractor (hired by VESID) attempted to buy a ramp section and install it to make at least one of my two ramps useable. Pyramid Ramps has refused to fill his order and said disparaging things about me.
I have written the Better Business Bureau about this. All I want is easy access to my home. It hurts that it has taken so much energy, time, pain and money to get done what was promised and what should have been done right the first time, nearly two years ago. (Money was spent on eliminating the two-inch step at the terminus of one ramp and evening out the dangerous transition at the other).
Your agency said it could do no more for me. But now through your selection, I am being denied the means to remediate the unhappy situation your supplier selection created.
Wednesday, April 15, 2009
Corning PARATRANSIT NEEDED!
I want to start a nonprofit to provide on-demand paratransit in the Corning, NY area.
From Elmira to Corning to Bath, there is no on-demand, wheelchair accessible transportation. I have contacted every agency from United Way to Pathways, from CEATS to AIM. Elmira offers its residents Dial-A-Ride, which enables assisted transportation for medicaid patients only. For
some jurisdictional reason, First Transit/CEATS (Corning Erwin Area Transportation System) does not offer even this limited possibility in Steuben. CEATS buses--- did not have modern tie downs nor seat belts for wheelchair riders. They have written me that they have fixed this, but the twice that I rode fearing for my safety, was two times too many to endure such laxity.
When I was recovering in Rochester, they had Lift Line buses available 20 hours a day 7 days a week requiring only a 24-hour reservation, and costing the user/rider an average of $1.75.
I've used Steuben Coordinated Transportation, when they let me--- and that is now only available for medical visits. They then wrote asking for contributions saying that the cost of each of my
trips by Steuben Area Rides was $27.50! In other words, the only possible service costs $27.50 to take me from Third Street in Corning to Wegmans, or to Guthrie Clinic. These are rides of under 2 miles.
I had several ideas to fix this sad situation:
1. Fund a vehicle with a lift
1a. have it managed by a taxi service, or by Institute for Human Services or AIM-CIL (Center for independent Living)
2. Fund the insurance rider that would enable Founder's Pavilion make their fleet available to residents by reservation
3. Fund an insurance rider that would enable Pathways to make their fleet available to
residents by reservation.
4. Create a nonprofit to provide the service I seek.
I spoke with a transportation planner who suggested that the organizations named above ( as well a Birnie Trasnportation which operates school buses in our area) are not interested in assisting the
public, and even if funded, would probably balk at the additional responsibility.
I've written, county, state and national representatives as well as every organization named.
I've also called officials and representatives.
I've been cautioned that the reason on demand paratransit doesn't exist is because we are a small area. But it's our very size that makes me think that this is easily accomplished. Even one vehicle($15,000) a driver, two cell phones, computer and dispatcher would make a huge difference where there is none.
As no one is addressing this critical issue.
Hence, these next steps to create the access I require.
Can you help?
Thanks in advance for your time and consideration.
That's the letter i wrote vs. killing myself. A year of not going anywhere--- not even as a baby was i ever so
confined, because even then i know there were weekly trips to Manhattan to be with the grandparents.
Only for my first 6 week was i in one place-- in Mama and Daddy Edwin's top dresser drawer while Hope got help/ instruction on my care. LOL! I can't imagine her not knowing, she was just brilliant --but I was their first grandchild. to not be able to travel or shop oooo this is like prison. i look at the sky and the birds and try not to lose my mind.
From Elmira to Corning to Bath, there is no on-demand, wheelchair accessible transportation. I have contacted every agency from United Way to Pathways, from CEATS to AIM. Elmira offers its residents Dial-A-Ride, which enables assisted transportation for medicaid patients only. For
some jurisdictional reason, First Transit/CEATS (Corning Erwin Area Transportation System) does not offer even this limited possibility in Steuben. CEATS buses--- did not have modern tie downs nor seat belts for wheelchair riders. They have written me that they have fixed this, but the twice that I rode fearing for my safety, was two times too many to endure such laxity.
When I was recovering in Rochester, they had Lift Line buses available 20 hours a day 7 days a week requiring only a 24-hour reservation, and costing the user/rider an average of $1.75.
I've used Steuben Coordinated Transportation, when they let me--- and that is now only available for medical visits. They then wrote asking for contributions saying that the cost of each of my
trips by Steuben Area Rides was $27.50! In other words, the only possible service costs $27.50 to take me from Third Street in Corning to Wegmans, or to Guthrie Clinic. These are rides of under 2 miles.
I had several ideas to fix this sad situation:
1. Fund a vehicle with a lift
1a. have it managed by a taxi service, or by Institute for Human Services or AIM-CIL (Center for independent Living)
2. Fund the insurance rider that would enable Founder's Pavilion make their fleet available to residents by reservation
3. Fund an insurance rider that would enable Pathways to make their fleet available to
residents by reservation.
4. Create a nonprofit to provide the service I seek.
I spoke with a transportation planner who suggested that the organizations named above ( as well a Birnie Trasnportation which operates school buses in our area) are not interested in assisting the
public, and even if funded, would probably balk at the additional responsibility.
I've written, county, state and national representatives as well as every organization named.
I've also called officials and representatives.
I've been cautioned that the reason on demand paratransit doesn't exist is because we are a small area. But it's our very size that makes me think that this is easily accomplished. Even one vehicle($15,000) a driver, two cell phones, computer and dispatcher would make a huge difference where there is none.
As no one is addressing this critical issue.
Hence, these next steps to create the access I require.
Can you help?
Thanks in advance for your time and consideration.
That's the letter i wrote vs. killing myself. A year of not going anywhere--- not even as a baby was i ever so
confined, because even then i know there were weekly trips to Manhattan to be with the grandparents.
Only for my first 6 week was i in one place-- in Mama and Daddy Edwin's top dresser drawer while Hope got help/ instruction on my care. LOL! I can't imagine her not knowing, she was just brilliant --but I was their first grandchild. to not be able to travel or shop oooo this is like prison. i look at the sky and the birds and try not to lose my mind.
Monday, March 16, 2009
No Room at GUTHRIE's CLINIC
There was no accessible room in the whole mulitfloor, multipractice, small hospital-sized clinic
Guthrie should be ashamed!
So I almost went untreated, unexamined!
The doctor YELLED at me, if you can't get on the table, I can't help you!
What i am supposed to do? WHEN I MADE MY APPOINTMENT, I ASKED FOR AN ADJUSTABLE TABLE
I SAID I WAS PARALYZED AND IN A WHEELCHAIR!!!
Three people had to lift me up and put me on the table
and the man held me while the doctor looked at my
butt
is this the 21 century in America after the ADA?!!
I called the local Council on Independent Living, but given their past
lack of support for anything, including transportation, nevermind
my non compliant ramps--- who nkws
Guthrie should be ashamed!
So I almost went untreated, unexamined!
The doctor YELLED at me, if you can't get on the table, I can't help you!
What i am supposed to do? WHEN I MADE MY APPOINTMENT, I ASKED FOR AN ADJUSTABLE TABLE
I SAID I WAS PARALYZED AND IN A WHEELCHAIR!!!
Three people had to lift me up and put me on the table
and the man held me while the doctor looked at my
butt
is this the 21 century in America after the ADA?!!
I called the local Council on Independent Living, but given their past
lack of support for anything, including transportation, nevermind
my non compliant ramps--- who nkws
Starting Again
March
a year home and nearly a year since my father died
and six months since Niles, fluffy cat died
And so I begin again to fight
My local neuro tells me he can't do squat for me. Go away
someplace else to that hospital in the city you were stuck in,
that i can't get to.... because I'm paralyzed and in wheelchair
and there's no transport in this town to anywhere, unless you drive
or fly away.
BUT I have been calling and begging for a referral to another neuro
why him vs my PC? Because my PC just up and left, the third one
I've lost in two cities and three years. Good one in that
she prescribed my Naltrexone as I requested and now no
one else at this hospital-sized clinic ( which has no accessible
examination rooms) feels "comfortable" renewing my script which is why
I am trying to get to another neuro......
I refused neurontin back when I was in the torture and abuse home
( no nursing, though it was considered one of the best for rehab).
I remember being derided for my concern about side effects--
well that sealed it for me. Since their actions were cruel and stupid,
and I went hungry for want of fresh anything, I knew to ignore them.
Why have i yet to run into the heroic or even competent doctors we see on TV?!!!!!
I am down to aspirin and naltrexone.
I take a lot of vitamins-- C, B12, folic,calcium, k12
B6, D, bentofiamine, and my pain-- for over a year
3 to 7, has been 0 to 2....
Why would you deny me something for my pain?
Because then i have to come see you and beg for the monstrous
crap... wait no... worse than that.....just uncaring and evil,
because, I'm supposed to go someplace I can't get to.
a year home and nearly a year since my father died
and six months since Niles, fluffy cat died
And so I begin again to fight
My local neuro tells me he can't do squat for me. Go away
someplace else to that hospital in the city you were stuck in,
that i can't get to.... because I'm paralyzed and in wheelchair
and there's no transport in this town to anywhere, unless you drive
or fly away.
BUT I have been calling and begging for a referral to another neuro
why him vs my PC? Because my PC just up and left, the third one
I've lost in two cities and three years. Good one in that
she prescribed my Naltrexone as I requested and now no
one else at this hospital-sized clinic ( which has no accessible
examination rooms) feels "comfortable" renewing my script which is why
I am trying to get to another neuro......
I refused neurontin back when I was in the torture and abuse home
( no nursing, though it was considered one of the best for rehab).
I remember being derided for my concern about side effects--
well that sealed it for me. Since their actions were cruel and stupid,
and I went hungry for want of fresh anything, I knew to ignore them.
Why have i yet to run into the heroic or even competent doctors we see on TV?!!!!!
I am down to aspirin and naltrexone.
I take a lot of vitamins-- C, B12, folic,calcium, k12
B6, D, bentofiamine, and my pain-- for over a year
3 to 7, has been 0 to 2....
Why would you deny me something for my pain?
Because then i have to come see you and beg for the monstrous
crap... wait no... worse than that.....just uncaring and evil,
because, I'm supposed to go someplace I can't get to.
Monday, October 27, 2008
Aide Gone, Activism
My aide was taken away, so now i more than intensely dislike the home health care service. This is the same ...
stupidity that i suffered in Rochester. Just when I settle into some routine or expectancy it is snatched away.
So what is the universe trying to tell me? If all is change, then change my paralysis into mobility again.
And this happens AFTER i see her and so I must make do, go hungry and without food until the new person shows up, because of course it is not on the day-- Monday that I usually had support. Another relationship lost, severed.
So I've written several letters to the editor. In September, CEATS came to my house to assess what I was talking about in terms of getting assistance on a bus. THE BUS HAD NO SEAT BELTS AND ANCIENT TIE-DOWNS. So yes, I can get a bus and take 30 minutes to get to the grocery store-- usually 3 minutes away--- which now i won't do
because it's 40 degrees in October and they said i would have to sit for 20 minutes at the transportation center.
Why is there no on demand transport with all these agencies with lift buses?!!! Why is it Rochester can do it and Corning can't?! Corning is 1/6 the size and has 1/10 the problems and it is sheer negligence that there is no
dial a bus, dial a ride. So how much do i keep fighting this situation and for remediation... if i could walk i would not need their
assistance their neglect could go unheeded. United Way, the Steuben County Legislature, the Mayor, the state
senator, the state assemblyman, the office of the aged, the mayor, our congressman, and our US Senators,
I've written them each in turn and all. No one has fixed this.
And i see the fix. Get either Pathways or Founder's Pavilion to respond to calls-- give them money to extend their insurance to do this or sponsor a vehicle with the local cab company..... Surely a Fortune 200 company town can make this happen. Lord, please help me.
So this is the salt in the wound of not having the lady who knew how to shop effeciently so the 2 hours i had her, more
than the week's groceries could be gotten, I could actually get a bit of help in the house.....sob. I can't shop for myself and have lost someone who could.
stupidity that i suffered in Rochester. Just when I settle into some routine or expectancy it is snatched away.
So what is the universe trying to tell me? If all is change, then change my paralysis into mobility again.
And this happens AFTER i see her and so I must make do, go hungry and without food until the new person shows up, because of course it is not on the day-- Monday that I usually had support. Another relationship lost, severed.
So I've written several letters to the editor. In September, CEATS came to my house to assess what I was talking about in terms of getting assistance on a bus. THE BUS HAD NO SEAT BELTS AND ANCIENT TIE-DOWNS. So yes, I can get a bus and take 30 minutes to get to the grocery store-- usually 3 minutes away--- which now i won't do
because it's 40 degrees in October and they said i would have to sit for 20 minutes at the transportation center.
Why is there no on demand transport with all these agencies with lift buses?!!! Why is it Rochester can do it and Corning can't?! Corning is 1/6 the size and has 1/10 the problems and it is sheer negligence that there is no
dial a bus, dial a ride. So how much do i keep fighting this situation and for remediation... if i could walk i would not need their
assistance their neglect could go unheeded. United Way, the Steuben County Legislature, the Mayor, the state
senator, the state assemblyman, the office of the aged, the mayor, our congressman, and our US Senators,
I've written them each in turn and all. No one has fixed this.
And i see the fix. Get either Pathways or Founder's Pavilion to respond to calls-- give them money to extend their insurance to do this or sponsor a vehicle with the local cab company..... Surely a Fortune 200 company town can make this happen. Lord, please help me.
So this is the salt in the wound of not having the lady who knew how to shop effeciently so the 2 hours i had her, more
than the week's groceries could be gotten, I could actually get a bit of help in the house.....sob. I can't shop for myself and have lost someone who could.
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....
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.
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.
Girl
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".
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".
Monday, May 19, 2008
Concerns: That No one Else Suffer
Monday May 19, 2008
Dear Mr. Eaton
I am paralyzed from the waist down in a wheelchair, unable to walk. I am new to my condition having spent over 52 years as an able-bodied person.
I am grateful for the help and support that SCAP afforded me, enabling me to return to my
home.
However several major things were not attended to and were not installed correctly.
What seemed accessible was not.
I desperately hope that my disheartening and difficult experience will save others in need from the same heartbreak.
My ramps, installed in September of 2007 by Pyramid Ramps, appeared in pictures to be too steep. I expressed this concern and was assured they only "appeared" too steep.
They were. Neither ramp met ADA guidelines, including those for a foot per inch of incline. The boards warped. Some are spaced, frighteningly far apart. The front ramp, inexplicably and sloppily installed half on dirt and half on the sidewalk, began to sink into the spring ground. It is too exhausting to recount the numerous emails, calls and discussions and reassessments in an effort to get them fixed.
As of this date, May 18, there are still issues which i am left to resolve myself. The front and back are both too steep. I cannot go out my front door unaided.I can exit and enter the back, as long as I don't carry anything. Last week, I fell backwards as I returned home from grocery shopping, as too steep slope acted on the bag of groceries. Fortunately the bus driver rushed over to right me.
A 2.5 inch step was left at the front of my house at the end of the ramp. At the rear the too-steep ramp terminated in an un-level, mixed surface walkway such that only three wheels touched the ground.
What was the role of the so-called disability expert in this? How could you install a ramp and leave a 2.5 inch drop, which of course, means no access. How could you install a ramp and leave ground that i could not roll over?
I have spent hundreds of dollars on these fixes-- money I don't have. It would have been nice to have had this considered, discussed and explored by the so-called expert/advisor, so that the funds raised for house amendment could have been raised for this as well. It would have been nice to know that still un-useable front ramp was to be my "emergency ramp." I did not know this at the time of the rehab, and had I, it is something else I would have asked my fundraisers to consider.
My shower was to be a roll in shower. It has a hard lip and slopes downward in TWO directions.
I was once independent in my bathing, now I must engage someone to assist me as I cannot safely access the shower alone. This is what should have been done for my shower http://www.accessibleconstruction.com/services/bathrooms/25.html a collapsible, roll-over barrier.
What was the role of the so-called disability expert in this? I remember her saying that she was on site for much of this work and yet the shower is unevenly installed. It is still the wrong kind of floor....another thing i had asked about -- I had asked for tile-- and was told that this type of shower was a cost effective solution. Not for me as I now must pay hundreds of dollars for a home health care aid.
I had asked that the shower not have a pre installed chair. I had said no to the chair. This chair is emblematic of the failure to listen, consider or even understand. The fold down chair was against the wall of the shower, more than four feet away from shower controls!!!! How could a paralyzed person, were she even able to land on the too-small spot, turn on the shower? When I pointed this out I was told well, just fold it up. As I was told repeatedly that this project strained the budget why was money wasted this way? Insult to injury, when I attempted independent access using a shower wheelchair, the foldup chair got in the way.
The chair took two men hours to cut it off, as they could not remove it and to my horror, they contemplated breaking my new wall to de-install it. Can you imagine my frustration? Ugly
pipe pieces stuffed with silicone now protrude from my wall.
My options are bleak: reconstruction, which would require me leaving my home, which I cannot afford or even figure out how to manage, or to live, only able to shower, when i can hire assistance.
I bought a shower wheelchair in an effort to not have to hire assistance, I had to pay for the removal of the 2.5 inch step and for some paving so i could attempt to exit my house independently and I pay for a home health aide-- something I did not have to do before. Thus far, fixing the fixes has cost me a devastating and unexpected $1500 and the costs
continue to mount.
These costs could have been avoided if someone who understood even a little of what a paraplegic needs, had been employed.
That this was not so, is a travesty. There was a window of opportunity to do it right the first time, while I was not in my home. This has gone.
Again, I hope this helps someone else not suffer from failed expectations or be stuck in a home that doesn't work.
Regards,
Dear Mr. Eaton
I am paralyzed from the waist down in a wheelchair, unable to walk. I am new to my condition having spent over 52 years as an able-bodied person.
I am grateful for the help and support that SCAP afforded me, enabling me to return to my
home.
However several major things were not attended to and were not installed correctly.
What seemed accessible was not.
I desperately hope that my disheartening and difficult experience will save others in need from the same heartbreak.
My ramps, installed in September of 2007 by Pyramid Ramps, appeared in pictures to be too steep. I expressed this concern and was assured they only "appeared" too steep.
They were. Neither ramp met ADA guidelines, including those for a foot per inch of incline. The boards warped. Some are spaced, frighteningly far apart. The front ramp, inexplicably and sloppily installed half on dirt and half on the sidewalk, began to sink into the spring ground. It is too exhausting to recount the numerous emails, calls and discussions and reassessments in an effort to get them fixed.
As of this date, May 18, there are still issues which i am left to resolve myself. The front and back are both too steep. I cannot go out my front door unaided.I can exit and enter the back, as long as I don't carry anything. Last week, I fell backwards as I returned home from grocery shopping, as too steep slope acted on the bag of groceries. Fortunately the bus driver rushed over to right me.
A 2.5 inch step was left at the front of my house at the end of the ramp. At the rear the too-steep ramp terminated in an un-level, mixed surface walkway such that only three wheels touched the ground.
What was the role of the so-called disability expert in this? How could you install a ramp and leave a 2.5 inch drop, which of course, means no access. How could you install a ramp and leave ground that i could not roll over?
I have spent hundreds of dollars on these fixes-- money I don't have. It would have been nice to have had this considered, discussed and explored by the so-called expert/advisor, so that the funds raised for house amendment could have been raised for this as well. It would have been nice to know that still un-useable front ramp was to be my "emergency ramp." I did not know this at the time of the rehab, and had I, it is something else I would have asked my fundraisers to consider.
My shower was to be a roll in shower. It has a hard lip and slopes downward in TWO directions.
I was once independent in my bathing, now I must engage someone to assist me as I cannot safely access the shower alone. This is what should have been done for my shower http://www.accessibleconstruction.com/services/bathrooms/25.html a collapsible, roll-over barrier.
What was the role of the so-called disability expert in this? I remember her saying that she was on site for much of this work and yet the shower is unevenly installed. It is still the wrong kind of floor....another thing i had asked about -- I had asked for tile-- and was told that this type of shower was a cost effective solution. Not for me as I now must pay hundreds of dollars for a home health care aid.
I had asked that the shower not have a pre installed chair. I had said no to the chair. This chair is emblematic of the failure to listen, consider or even understand. The fold down chair was against the wall of the shower, more than four feet away from shower controls!!!! How could a paralyzed person, were she even able to land on the too-small spot, turn on the shower? When I pointed this out I was told well, just fold it up. As I was told repeatedly that this project strained the budget why was money wasted this way? Insult to injury, when I attempted independent access using a shower wheelchair, the foldup chair got in the way.
The chair took two men hours to cut it off, as they could not remove it and to my horror, they contemplated breaking my new wall to de-install it. Can you imagine my frustration? Ugly
pipe pieces stuffed with silicone now protrude from my wall.
My options are bleak: reconstruction, which would require me leaving my home, which I cannot afford or even figure out how to manage, or to live, only able to shower, when i can hire assistance.
I bought a shower wheelchair in an effort to not have to hire assistance, I had to pay for the removal of the 2.5 inch step and for some paving so i could attempt to exit my house independently and I pay for a home health aide-- something I did not have to do before. Thus far, fixing the fixes has cost me a devastating and unexpected $1500 and the costs
continue to mount.
These costs could have been avoided if someone who understood even a little of what a paraplegic needs, had been employed.
That this was not so, is a travesty. There was a window of opportunity to do it right the first time, while I was not in my home. This has gone.
Again, I hope this helps someone else not suffer from failed expectations or be stuck in a home that doesn't work.
Regards,
Going to the doctor at long last
I went to the doctor all by myself.
this is what i thought it would be like.
A bus like Liftline came
there was one other person on it.
Getting on a bus at my own house was like heaven.
I am in tears of gratitude relief and joy.
The bus driver was familiar.She used to work at the Radisson,
had a hip replacement. We bonded over
emptying IRAs to help ourselves through our
health crisis, getting help from
grants and friends and NOT getting
medicaid. She see people working the system on her
bus and how she no lives for today because the
hip replacement ordeal opened her eyes.
She tugged me on and off the grass and waited for me to get up the ramp
before pulling off.
and i met one month old
the latest grandchild of L and L had a stroke while i was gone
and suddenly has white hair
he'll mow for $25 as often as it needs it though
he wants to raise his rates to $27 i said cut me a break and please please
don't mow my flowers i know you hate flowers and he said
no i don't, look at all my hostas and laughed
saying L those are mainly about big green leave
and he and his daughter asked me what i had and THEY had heard of
it S a couple of blocks away had it
and his daughter pronounced that i would walk again
and this is how i remembered home
the apple tree in bloom and my flowers
and L will mow and promised promised
that he would not mow down my flowers
I have high blood press 162 over 90 and the doctor wants
me to take pills and i said no what else can i do
and she said workout with 5 pound weights and she commended me for using the
manual
I have a referral for a neuro, a mammogram and a colonoscopy...
which i dread because they give you something to empty out your bowels
and that will mess with my routine... or worse, I'll just be a mess....
The doctor did not have or refer to my records
she was wierd as always though i tried to chat her up
The LPN said they couldn't do a papsmear as they have wheelchair accessible rooms
that is with the low tables.... and this Clinic is the size of a small hospital
and spacious so this to me is a travesty but i had one last year this time
so i won't bug about it till Fall.
I am so happy to have gone out all by myself and have come home
all by myself, my first time and the kitties celebrated with me.
this is what i thought it would be like.
A bus like Liftline came
there was one other person on it.
Getting on a bus at my own house was like heaven.
I am in tears of gratitude relief and joy.
The bus driver was familiar.She used to work at the Radisson,
had a hip replacement. We bonded over
emptying IRAs to help ourselves through our
health crisis, getting help from
grants and friends and NOT getting
medicaid. She see people working the system on her
bus and how she no lives for today because the
hip replacement ordeal opened her eyes.
She tugged me on and off the grass and waited for me to get up the ramp
before pulling off.
and i met one month old
the latest grandchild of L and L had a stroke while i was gone
and suddenly has white hair
he'll mow for $25 as often as it needs it though
he wants to raise his rates to $27 i said cut me a break and please please
don't mow my flowers i know you hate flowers and he said
no i don't, look at all my hostas and laughed
saying L those are mainly about big green leave
and he and his daughter asked me what i had and THEY had heard of
it S a couple of blocks away had it
and his daughter pronounced that i would walk again
and this is how i remembered home
the apple tree in bloom and my flowers
and L will mow and promised promised
that he would not mow down my flowers
I have high blood press 162 over 90 and the doctor wants
me to take pills and i said no what else can i do
and she said workout with 5 pound weights and she commended me for using the
manual
I have a referral for a neuro, a mammogram and a colonoscopy...
which i dread because they give you something to empty out your bowels
and that will mess with my routine... or worse, I'll just be a mess....
The doctor did not have or refer to my records
she was wierd as always though i tried to chat her up
The LPN said they couldn't do a papsmear as they have wheelchair accessible rooms
that is with the low tables.... and this Clinic is the size of a small hospital
and spacious so this to me is a travesty but i had one last year this time
so i won't bug about it till Fall.
I am so happy to have gone out all by myself and have come home
all by myself, my first time and the kitties celebrated with me.
Sad Affirmations
The SCAP lady returned on Friday with another crew-- Goldstar to screw down the boards on the ramps, as they are warping (visibly rising and curling after every rain)
I took her to task about the ramp guy and Shiela-- how could she approve things that weren't even in spec? Well John the ramp guy approved it That's like having the fox guard the hen house. I exclaimed!!! Well is he had to redo them, then it wasn't to his benefit. Sure it was I said, because according to you, no one else ever complained.
She wondered why. I said only stuff that wasn't even me kept me going, because the process wore me down and was painful. And this was all new to me. Each year gets harder so if i had been used
to being denied, it might be different.
Like her saying how the amendment was because it was "uncomfortable" and come to find out it didn't EVEN meet ADA standards.... so it wasn't about my comfort... it was out of spec!
The guys tried to take the seat that i said i didn't want, out of the shower. I showed them how i couldn't even fit in the shower with my wheelchair, because i had to pop over the lip and back in.
I refused to let them bust a hole in my wall to do it, i said get a saw and just cut the metal
i no longer care if it's not reusable---
and i got to say to the SCAP lady.... i told her ( the idiot sheila who insisted on the useless chair)
that i didn't want it and not to put one in... now we can't get it out....!
She said i know i know.
Anyway the Godlstar guy said that the shower was WRONGGG!!!!!
shit piss and corruption, of course i have a problem entering it, it shouldn't have the lip on it and yes it
down slope down (vs up like the bathtub) so sure i would have trouble getting in it.
I was glad the scap lady was there to hear him say it was the wrong kind of shower. though it has cost me tons of money and more, all my self sufficiency.
I took her to task about the ramp guy and Shiela-- how could she approve things that weren't even in spec? Well John the ramp guy approved it That's like having the fox guard the hen house. I exclaimed!!! Well is he had to redo them, then it wasn't to his benefit. Sure it was I said, because according to you, no one else ever complained.
She wondered why. I said only stuff that wasn't even me kept me going, because the process wore me down and was painful. And this was all new to me. Each year gets harder so if i had been used
to being denied, it might be different.
Like her saying how the amendment was because it was "uncomfortable" and come to find out it didn't EVEN meet ADA standards.... so it wasn't about my comfort... it was out of spec!
The guys tried to take the seat that i said i didn't want, out of the shower. I showed them how i couldn't even fit in the shower with my wheelchair, because i had to pop over the lip and back in.
I refused to let them bust a hole in my wall to do it, i said get a saw and just cut the metal
i no longer care if it's not reusable---
and i got to say to the SCAP lady.... i told her ( the idiot sheila who insisted on the useless chair)
that i didn't want it and not to put one in... now we can't get it out....!
She said i know i know.
Anyway the Godlstar guy said that the shower was WRONGGG!!!!!
shit piss and corruption, of course i have a problem entering it, it shouldn't have the lip on it and yes it
down slope down (vs up like the bathtub) so sure i would have trouble getting in it.
I was glad the scap lady was there to hear him say it was the wrong kind of shower. though it has cost me tons of money and more, all my self sufficiency.
Thursday, May 01, 2008
Worse Than EVER
BUT, the great undoer.
I had to be lifted over a 2.5 inch step to enter my house.
My ramps at the front and back were both too steep for me to try alone.
I had been told that it only appeared that way in the pictures.
They both were too step in that NEITHER met ADA standards.
And inside, I could not get off my shower char... the slope downward in the shower
just enough for me to be unable to managage alone.
So back in my accessible home, I have new inaccessibilities and now
require help where I had not had and did not need any for two years....
It's been MONTHS of calls, cajolings, administrivia and the
salt in the wound of woundedness occurred today.
I called to double check on my transport for the doctor's tomorrow,
even though they told me to call the morning of, I hate to leave things until the last moment.
I chatted about the time... the doctor's appointment is for 11:15
and would the van be here at 10:30 later, sooner?
The doctor's office is over the bridge, across from the Museum,
5 minutes away.
They put me on hold then a woman came on and told me
that a mistake had been made, they don't do Dial a Ride in
Corning.
Now this is after a dozen phone calls to find them, call again to get the forms,
send in the forms, ascertain whether the forms where received, check on the progress
of the status of being certified, assuring that I was certified. making the reservation....
I started this process before even making the doctor's appointment and
the doctor's appoint was made the first week in March for May 2.
I had been annoyed that it was 8 dollars each way, regardless of distance,
now there are no door to door options for me.
The idiot apologized but i was apoplectic.
How how how how and then knowing she made this error why couldn't she
just provide me my ride to the doctor?
She could do a route deviation which will cost me $3--- my
barrier is that I still can't get in and out my house alone!!!!!
They are coming tomorrow to bolt down the warping boards but will not
extend the too steep front and won't fix the still hard to get off back ramp.
Anyway a million phone calls later, my aide has switched her time
and will be here to help me on the bus and I pray I'll be able to figure out a way to get back in the
house.
I'm very depressed and tired of arguing, calling and this kind of crass moronic incompetence
and cruelty.
I had to be lifted over a 2.5 inch step to enter my house.
My ramps at the front and back were both too steep for me to try alone.
I had been told that it only appeared that way in the pictures.
They both were too step in that NEITHER met ADA standards.
And inside, I could not get off my shower char... the slope downward in the shower
just enough for me to be unable to managage alone.
So back in my accessible home, I have new inaccessibilities and now
require help where I had not had and did not need any for two years....
It's been MONTHS of calls, cajolings, administrivia and the
salt in the wound of woundedness occurred today.
I called to double check on my transport for the doctor's tomorrow,
even though they told me to call the morning of, I hate to leave things until the last moment.
I chatted about the time... the doctor's appointment is for 11:15
and would the van be here at 10:30 later, sooner?
The doctor's office is over the bridge, across from the Museum,
5 minutes away.
They put me on hold then a woman came on and told me
that a mistake had been made, they don't do Dial a Ride in
Corning.
Now this is after a dozen phone calls to find them, call again to get the forms,
send in the forms, ascertain whether the forms where received, check on the progress
of the status of being certified, assuring that I was certified. making the reservation....
I started this process before even making the doctor's appointment and
the doctor's appoint was made the first week in March for May 2.
I had been annoyed that it was 8 dollars each way, regardless of distance,
now there are no door to door options for me.
The idiot apologized but i was apoplectic.
How how how how and then knowing she made this error why couldn't she
just provide me my ride to the doctor?
She could do a route deviation which will cost me $3--- my
barrier is that I still can't get in and out my house alone!!!!!
They are coming tomorrow to bolt down the warping boards but will not
extend the too steep front and won't fix the still hard to get off back ramp.
Anyway a million phone calls later, my aide has switched her time
and will be here to help me on the bus and I pray I'll be able to figure out a way to get back in the
house.
I'm very depressed and tired of arguing, calling and this kind of crass moronic incompetence
and cruelty.
Home 1
I must start back at the joy, without remembering the joy, I would dismember my soul. Ha! I have already lost the use of limbs, I must cauterize the psychic wound of having to be at the mercy of meanness and idiocy, I enjoyed the mercy and kindness of strangers and must dwell in the grateful place to help me through the incredible pain of present disappointment
Dear Friends and Family,
Getting back home was quite an adventure through a snow storm!
And getting back online was another -- a 4 hour installation, New lines to be strung, holes to be drilled.
But at last I am here again, in my reimagined abode. I am blessed
with light, no matter the brightness of the day. I forgot that my house is pierced and nearly translucent -- 13 windows on this floor and the back door is half window and the front door has a long attenuated oval of clear glass.
This is a clear, energetic space.
My kitchen is a singular delight with a wonderful double sink (missed this!)
gas stove top and tons of counter space. I had forgotten how much storage I had, because having lost most of one wall of it,the remaining cabinets are plentiful and lovely. I glide across the gorgeous
wooden floor with the greatest of ease.I am affirmed in my choices: the slate/stone vinyl in bathroom and kitchen is neutral as I wanted it to be. My funky old mudroom entry at the back is spacious . I smile remembering squeezing by the lawn mower (and chipper and weed eater,etc. LOL!). There is a wide landing at the back.
There are surprises outside: my beloved catalpa that I planted is truly young tree now and larger than the city's maple (planted in 2005). I see thorned canes that suggest a rose against a window - how did it get next to the house? And at the front big window there is an alien woody something - I remember fighting it and now its woody limbs assert themselves, but not for long.
Niles has re-realized his large-pawed big furred-ness. He jumped off the ramp into the snow.
No way for me to chase him anymore, I came inside and locked the door.
Five minutes later I heard a knock at the door. It was him! New behavior, happy exploration. Obi
leaps again in the air, runs and slides. They kept home those lonely months without me and now we are back and together.
I am so grateful to be returned!!!
Thank you THANK YOU THANK YOU for your support in enabling me to survive that hell.
I will write more and individually, as soon as i wade through the
3745 e-mails that accumulated while I waited for reconnection.
Peace, joy and love to you all.
Dear Friends and Family,
Getting back home was quite an adventure through a snow storm!
And getting back online was another -- a 4 hour installation, New lines to be strung, holes to be drilled.
But at last I am here again, in my reimagined abode. I am blessed
with light, no matter the brightness of the day. I forgot that my house is pierced and nearly translucent -- 13 windows on this floor and the back door is half window and the front door has a long attenuated oval of clear glass.
This is a clear, energetic space.
My kitchen is a singular delight with a wonderful double sink (missed this!)
gas stove top and tons of counter space. I had forgotten how much storage I had, because having lost most of one wall of it,the remaining cabinets are plentiful and lovely. I glide across the gorgeous
wooden floor with the greatest of ease.I am affirmed in my choices: the slate/stone vinyl in bathroom and kitchen is neutral as I wanted it to be. My funky old mudroom entry at the back is spacious . I smile remembering squeezing by the lawn mower (and chipper and weed eater,etc. LOL!). There is a wide landing at the back.
There are surprises outside: my beloved catalpa that I planted is truly young tree now and larger than the city's maple (planted in 2005). I see thorned canes that suggest a rose against a window - how did it get next to the house? And at the front big window there is an alien woody something - I remember fighting it and now its woody limbs assert themselves, but not for long.
Niles has re-realized his large-pawed big furred-ness. He jumped off the ramp into the snow.
No way for me to chase him anymore, I came inside and locked the door.
Five minutes later I heard a knock at the door. It was him! New behavior, happy exploration. Obi
leaps again in the air, runs and slides. They kept home those lonely months without me and now we are back and together.
I am so grateful to be returned!!!
Thank you THANK YOU THANK YOU for your support in enabling me to survive that hell.
I will write more and individually, as soon as i wade through the
3745 e-mails that accumulated while I waited for reconnection.
Peace, joy and love to you all.
Wednesday, January 23, 2008
JanuFeb
Janufeb is what the NPR blatherer said. Cold. dismal. The street for cars cleaner than the sideawlk that the
wheelchair must traverse and the old folks shufffle extra slowly and press the quadcanes down, or lean on their carts, happy for more traction. We can see the fat tub of lard maintenance man sitting in the library, reading the paper as we slip and slide to the bus.
B. is beautiful so handsome that I don't even see him, holding the door for me. And the carts that were stuffed on the lift by my awful neighbors, he yanks off and whisks me on and banters.
Yea America is going to blazes but he is ready for the rapture, so it doesn't matter what happens. When you take God out of it, this is what you get....
I hear him solemnly and hold his words as truth. Unlike the monster bibleclass lady, he carries
himself like a light of god. He endures the old folks with patience. When he removes his
hat, his dark bald head gleams with fiercesome symmetry. He is impeccable in his casual
work clothes, neat layers.
I don't know why today I see how handsome he is. Maybe because I am leaving and know I will not ever see him again. I relish his kindness, as he whisks me through the snowdirty sidewalk
to the ramp, and from the bus into the store, and then, when home, off the bus into the building. A thrill a ride a kindness....
While onlin in the supermarket Y. the incessant gabber says, gee if i ahdnt unpacked my stuff i would let you in front of me..... gee you could still squeeze in, do you want to get in front of me?
She buys tons of stuff as if for four people. How she and the fat man and the three cats fit in a space i alone find too small is not something i contemplate.... i know the benefits of two feet, of verticality...
I tell her " You always get in the wheelchair aisle"
She is stunned as if i smacked her or cursed her.
I did but not with words.
I called her bluff.
She didn't need to offer to let me in front, she just needed to not be in that aisle.
So she spent all her time quizzing the checkout lady about the wheelchair aisle.
When I got to check out I told the checkout lady that the woman was my neighbor and that
if she were any shopper, sure, she could enter the empty aisle, but since she came with me on the same bus and there -- see the bus was here to pick us up, that she
was just wrong to jump in the wheelchair aisle with ten tons of stuff...
the checkout lady didn't quite get it, but I didn't press it.... but the man behind me did and helped her pack my bag on the back of my chair.
I thanked them both.
Y. yakked loudly and nervously asking B. does it distract you to talk when you're driving?
and told stories about peeing in Italy because R. had to get off the bus and go back in the store to pee.
But as I wrote, this will end with B. making my return home, fun, I will get a ride, a thrill, he will almost mow down my slow neighbors and spin me around in front of the elevators
and smile and wait for me to look up into his handsome face and thank him, bless him and wish him godspeed
Tuesday, January 22, 2008
Because
Someone tore down my sign explaining that the crochet workshop was to focus on making things for the KwaZulu Natal babies brought home in newspapers. This is the 4th time in 2008. Today is only the 22, Tuesday, the day of the workshop.
I thought in leaving i would be freed from the endless mindnumbing sheaves of forms this idiotic palce makes me fill out. No, i had to fill out another form. On it they ask why are you leaving.
Ha! I don't remember exactly what I wrote something short and cute like death despair disrespect disrepair....
but yesterday as i rolled in backwards to put the tokette in the machine, after waiting for it for hours because it is the only front loader and therefor the only floor on which i can wash i thought of how horrible it was that even doing it this way, the machine ate my tokette, didn't start and so i lost a wash's worth of detergent.
so today io began my because list...
because washing macines are only available from 9 whenever tony feels like opening the rooms to 8 40 pm whenever he feels like locking them up
because we must pay 1:25 per load
because we must buy these stupid plastic things and yet and stil the laundry rooms can't be open 24/7
because the recycle trash room is only open 9 to 5 Monday to Friday and officially only a part of a day on Saturday and this makes no sense whatsoever, because if you work or have any kind of life, you won't get your recycling in the room during the normal business day
what is so special about the trash and recycling room that is must be locked
the alleged safety measure of disabling the possibility of buzzing anyone in after 5 p.m. which is often the hour that medical deliveries arrive for the ill and dsiabled, only means that residents generally let anyone in a uniform who is decent looking into the building to spare their decrepit neighbors the hassle of dresssing and leaving their apratments to let someone in
of course this makes security such as it is, even less
because when the man hit the ground outsidethe office window, the manager didn't look
because the manager said I'm on the phone when the attempt to tell her the man was squashed on the ground outside her office
because the manager left the keys not lost them and so put the whole building in danger
because the tenants were never told this happened
because the good lady who gets free food for the buidling was burglered when she went to church
because when i found out I wrote and called and got my locks changed but the buidling's
locks were not changed for 4 months after the masterkey was lost
because my neighbors put up with this and did not complain but they are very willing to
gossip, get in the way, block my path getting on the bus and be loud
because someone stole my handmade black santa clause
because i had to argue to get plain potatoe chips in the vending machine and then the creep put it in the one slot that doesn't work
because my wheelchair has no camber and only one rail so i can fit through the doorways of this handicapped accessible apartment
because i can't enter the garbage chute room on any floor because is has a step down and
a door that slams shut, and it's as anrrow as the catwalk kitchen, so even if i were to attempt it,
I couldn't turn around and pop myself up over the lip. I can only enter and exit backwards,
because the sink is too high
because the refrigerator requires defrosting, another contortionist, messmaking challenge
for me in a wheelchair
because the liars at HUD never fixed the front door on which i have scraped and bruised my knuckles
Because the front doors are glass and heavy and the easy back doors are a step down
because the tenant's group was told that it can't engage any issues of import
because idiot mincing J locked the door to the community room even though on it was a sign about the Crochet class
Because crazy P had a many curing wildly in the hallway F u Fu Fu Fu the very day she had
harassed me
because the washing machine on my floor is still broken after nearly a year
because there are only two good dryers in the whole building
because the one time I ran out of checks, you wouldn't take credit and told me i had to go out in the cold in my wheelchair and get cash for the rent, though i offered to pay by creditcard
( God rescued me and spared me the fine)
because i have to pay for the tokettes in cash, a check for them is not accepted, which uses up hard to get cash
because none of this makes sense and is burdensome and oppresssive
because my friend was given a hard time for dropping off my mail
because Dorr never got the card i created that people were supposed to sign when they came to the office
because my materials were lost and I had to dig them out again and sign your stupid forms again
because the bible lady brought a baby to the film screening and the baby made noise through the whole thing
because i dropped my knitting needle and no one told me or gave it to me
because when i most needed it, the store would close early
because after they hooked me on some item, they would stop stocking it
because the 101 year old lady hit me 3 times
because my alleged friend hit me on my knees
because my other alleged friend shoved me and hurt my arm
because the alarms were presented as a feature and R told me that she prayed for God to help her off her knees after no one answered her alarm
because one of those who hit me thinks she is a good person and yet, she did not answer
R's alarm
because this is supposed to be a building for the elderly or older disabled and yet there are these stupid burdensome rules
because someone tore down the sign for Caroling 6 times, as well as my many signs for stuff
to be taken to the nursing home. Thank God for computers and printers.
Tuesday, December 18, 2007
Lord, I am Wounded, I am Blessed
I am so hurt, so broken, so sad, so beaten up, so abused, so lacking and so in mourning.An idiot neighbor attacked
me, fighting over the laundry room. I stopped her from starting her wash, telling her i had clothes in the dryer, and strapped to my body was my next pile of laundry to dry. I removed the dry, put in the wet and as i began to fold thedry she went off on me. And to tell the truth. I on her, as the rules are only one person to the closet sized
wash room at a time... She was annoyed at me folding, but as washing takes less time than drying--- there was no way for her to finish anything until i wadone anyway. We got into it until i remembered that i was not short, but in a wheel chair. This sudden recognition depressed me and I snatched up the unfolde clothes piling them on my lap
and wheeled into my apartment--- which is right across from the laundry room. Hers. too is on this floor, so yes she could have marked her claim to the washing machine and retreated to let me just fold and fishi in peace, but no.
So I arose early, ate early did my ablution early early so that when the knock on the door to change the locks came, i would not wirthe and roll back and forth, I would not be stressed or rushed, but gusee what--- they won't be doing the locks today as we ere notified they would be, and I don't trust them nor want them owrking on the door locks
when I am not here.
This is not paranoia as the lock change is occasioned by the losss of the master keys and further, the office door
being left unlocked subsequent to that..... and remembering how in the past, they just opened the door on me twice, while i lay in bed undressed... see I thought this was America and that people couldn't just enter you space unannounced....
but no if you are disabbled, not if you are cripple, not if you are handicapped... for me this is no differently abled, this is jacked up, this is pain and humiliation
YET YET YET o Lord, I have been rescued and rescued and rescued for that RESCUE and to my RESCUERS all I
give Thanks and PRAISE for hearing my abject need and responding to it... especailly as it did not come from anyplace expected or even imagined and it has been terrific and kept me from killing myself as I did consider last year as I went hungry and worried and was hurt again and again and abused by the medical establishment o thank you Lord for that part being over... the pharmacy that wouldn't ever set a time for delivery thank you for freeing me from their meds! And the MONSTERS at Visiting Nurse Service at Rochester, that stole money and time from my care that I had to pay for and treated me horribly, o what hell that was, deriding and chiding me for asking for the aid who worked, calling her and having ten minute conversations with her while she was working with and on me... and through all that working and working, puttin in all thos UNPAID hours, trying to move things forward, only to be abused and exploited by my boss.....
and the shock of it all, to enbcounter this monstrousness at this stage in life. to hold the shimmering dream of what I aimed for--multiple careers, family, community and worked for and achieved, to have it all dismantled and
derided and denied....
Lord di I need these lessons? Didn't I work hard, get three dgrees, put in 60 to 80 work weeks, love and marry, and love again, want babies, create a home, devote myself to my art, to organizing, to human rights, to being
good and not turning on my brethren or sistren for the coporate tokens. And maybe yes, this is what has spared me total and abject destruction, maybe that is what has enabled rescue. But still I yearn for what I had-- moblity , the ability to plantm y garden and mail my letters walking up the hill to the post office, to go and see my family... o please let me walk again so i can see my father before he forgets me totally... he only remebers me a little,
I am a reflex, and he tells me everytime we talk "To thine Own Self Be True". I tell him the stories he told me and rhen he remembers protecting the store, selling applesl, how Flrrie was the rough parent, she might take a broom stick to someone. I love my father so much. I am so much his creature and my mothers and I feel in this frailty I fail their great bright dream. And i want to help with him, spell his wife and take care of him because he was such a great and tender caretaker. O god! He was so good with me as a teenager, as I suffered my periods, he understood.
He knew I inherited my shyness from him along with my hayfever and flat feet. He kept my mother and I connected and relating until I fell in love with her again. He didn't mess up at all at all until my divorce, which is probably why it bothered me so much....
Anyway the blessing of his huge love and understanding is another reason I haven't offed myself. HE worked too damn hard for me to toss this away and he survived Korea nad Harlem and th post office to create his blue heaven....
The radio was playing song for my Father, by the way, which i started sining, so i left my stupid lament to at least mourn and yearn for something wonderful, to sit with my Daddy- O again.
me, fighting over the laundry room. I stopped her from starting her wash, telling her i had clothes in the dryer, and strapped to my body was my next pile of laundry to dry. I removed the dry, put in the wet and as i began to fold thedry she went off on me. And to tell the truth. I on her, as the rules are only one person to the closet sized
wash room at a time... She was annoyed at me folding, but as washing takes less time than drying--- there was no way for her to finish anything until i wadone anyway. We got into it until i remembered that i was not short, but in a wheel chair. This sudden recognition depressed me and I snatched up the unfolde clothes piling them on my lap
and wheeled into my apartment--- which is right across from the laundry room. Hers. too is on this floor, so yes she could have marked her claim to the washing machine and retreated to let me just fold and fishi in peace, but no.
So I arose early, ate early did my ablution early early so that when the knock on the door to change the locks came, i would not wirthe and roll back and forth, I would not be stressed or rushed, but gusee what--- they won't be doing the locks today as we ere notified they would be, and I don't trust them nor want them owrking on the door locks
when I am not here.
This is not paranoia as the lock change is occasioned by the losss of the master keys and further, the office door
being left unlocked subsequent to that..... and remembering how in the past, they just opened the door on me twice, while i lay in bed undressed... see I thought this was America and that people couldn't just enter you space unannounced....
but no if you are disabbled, not if you are cripple, not if you are handicapped... for me this is no differently abled, this is jacked up, this is pain and humiliation
YET YET YET o Lord, I have been rescued and rescued and rescued for that RESCUE and to my RESCUERS all I
give Thanks and PRAISE for hearing my abject need and responding to it... especailly as it did not come from anyplace expected or even imagined and it has been terrific and kept me from killing myself as I did consider last year as I went hungry and worried and was hurt again and again and abused by the medical establishment o thank you Lord for that part being over... the pharmacy that wouldn't ever set a time for delivery thank you for freeing me from their meds! And the MONSTERS at Visiting Nurse Service at Rochester, that stole money and time from my care that I had to pay for and treated me horribly, o what hell that was, deriding and chiding me for asking for the aid who worked, calling her and having ten minute conversations with her while she was working with and on me... and through all that working and working, puttin in all thos UNPAID hours, trying to move things forward, only to be abused and exploited by my boss.....
and the shock of it all, to enbcounter this monstrousness at this stage in life. to hold the shimmering dream of what I aimed for--multiple careers, family, community and worked for and achieved, to have it all dismantled and
derided and denied....
Lord di I need these lessons? Didn't I work hard, get three dgrees, put in 60 to 80 work weeks, love and marry, and love again, want babies, create a home, devote myself to my art, to organizing, to human rights, to being
good and not turning on my brethren or sistren for the coporate tokens. And maybe yes, this is what has spared me total and abject destruction, maybe that is what has enabled rescue. But still I yearn for what I had-- moblity , the ability to plantm y garden and mail my letters walking up the hill to the post office, to go and see my family... o please let me walk again so i can see my father before he forgets me totally... he only remebers me a little,
I am a reflex, and he tells me everytime we talk "To thine Own Self Be True". I tell him the stories he told me and rhen he remembers protecting the store, selling applesl, how Flrrie was the rough parent, she might take a broom stick to someone. I love my father so much. I am so much his creature and my mothers and I feel in this frailty I fail their great bright dream. And i want to help with him, spell his wife and take care of him because he was such a great and tender caretaker. O god! He was so good with me as a teenager, as I suffered my periods, he understood.
He knew I inherited my shyness from him along with my hayfever and flat feet. He kept my mother and I connected and relating until I fell in love with her again. He didn't mess up at all at all until my divorce, which is probably why it bothered me so much....
Anyway the blessing of his huge love and understanding is another reason I haven't offed myself. HE worked too damn hard for me to toss this away and he survived Korea nad Harlem and th post office to create his blue heaven....
The radio was playing song for my Father, by the way, which i started sining, so i left my stupid lament to at least mourn and yearn for something wonderful, to sit with my Daddy- O again.
Sunday, December 09, 2007
Crow Sky
It was stunning and a bit scary. Though we couldn't hear it, the real time visual seemed to fill the ear with the flapping of wings. They were massing, they were moving and they weren't in the lovely v phalanx of geese. I don't even remember if there were cas. but they came and broke, it seemed, against the edge of the buidling some dashing toward, some near grazing the window.
The cats watched, too....
I read that crows do this for reasons we don't know. They mass on a psot in late fall in late day... I never saw this before and I haven't seen it again...
Monday, November 05, 2007
Letters I wont Send 2/3
dear new no longer friend,
i so wanted to believe we were friends. You pretended we were.
I hate that I counted past three.
I am sad that you revealed you were the monster that interfered when i was new here and washing, that you then derided me, saying some people
just don't appreciate help, when all you did at the time was frighten
and interrupt me. That you, going blind, think that kind of behavior was and is okay,
Then the time you hit me on the bus and hurt my knees
like it was a ha ha and it wasn't. It hurt through the paralysis and added to my constant pain.
How dare you!
And so slowly i realized that i was just a tissue for you.
This is your homeland and your family is near. I foolishly shared the little i had, the little access, the freebies, the extras.
And slowly it has dawned on me, that you share nothing, really. Not the family you talk about, nor even the opportunity to pick something up when your friends take you shopping.
My lack is mobility, not insight or feeling. I am so sad to realize how jive you are.
i so wanted to believe we were friends. You pretended we were.
I hate that I counted past three.
I am sad that you revealed you were the monster that interfered when i was new here and washing, that you then derided me, saying some people
just don't appreciate help, when all you did at the time was frighten
and interrupt me. That you, going blind, think that kind of behavior was and is okay,
Then the time you hit me on the bus and hurt my knees
like it was a ha ha and it wasn't. It hurt through the paralysis and added to my constant pain.
How dare you!
And so slowly i realized that i was just a tissue for you.
This is your homeland and your family is near. I foolishly shared the little i had, the little access, the freebies, the extras.
And slowly it has dawned on me, that you share nothing, really. Not the family you talk about, nor even the opportunity to pick something up when your friends take you shopping.
My lack is mobility, not insight or feeling. I am so sad to realize how jive you are.
Saturday, November 03, 2007
Letters I Won't Send 3/3
I suddenly realized that i should post these here on my blog. The miscreants I write about won't read them, so why not?
This is the latest one:
dear bible study group,
i won't return. i should have left as soon as i realized that it was organized by the same self centered biddy who brought a baby to our thursday matinee and remained, right in front of me, who could not run away, with the screaming, restless, nosy armling throughout the whole movie.
And i should not have stayed after i was left to struggle in the door unassisted --- aid only being offered as i struggled to replace the chair i had to move to get in the door
and i should have left when i suggested the door be left open for bit, in case anyone else was looking for the meeting as neighbors in the other half of the community room were partying and not in the mood to direct anyone next door.
Because no, they did not tell me the meeting was on the other side of the divider and why make finding it hard?
And i won't come back, because no one asked my name nor told me their's
only aksing if i had a bible with me and if I had a piece of paper. And yes, I came with all of that.
And i won't come back because I was not asked what i migh know or want to know
And i won't come back because we actually read next to nothing, instead only glanced at verses while the old man spoke from another place and time
And i won't come back because i dropped my bible as i packed up and in so doing lost my tiny knitting needle.
and no one called me back for it, nor picked it up and so yes it was there the next day, a white arrow on the dark floor, pointing toward the door.
__________________
This is the latest one:
dear bible study group,
i won't return. i should have left as soon as i realized that it was organized by the same self centered biddy who brought a baby to our thursday matinee and remained, right in front of me, who could not run away, with the screaming, restless, nosy armling throughout the whole movie.
And i should not have stayed after i was left to struggle in the door unassisted --- aid only being offered as i struggled to replace the chair i had to move to get in the door
and i should have left when i suggested the door be left open for bit, in case anyone else was looking for the meeting as neighbors in the other half of the community room were partying and not in the mood to direct anyone next door.
Because no, they did not tell me the meeting was on the other side of the divider and why make finding it hard?
And i won't come back, because no one asked my name nor told me their's
only aksing if i had a bible with me and if I had a piece of paper. And yes, I came with all of that.
And i won't come back because I was not asked what i migh know or want to know
And i won't come back because we actually read next to nothing, instead only glanced at verses while the old man spoke from another place and time
And i won't come back because i dropped my bible as i packed up and in so doing lost my tiny knitting needle.
and no one called me back for it, nor picked it up and so yes it was there the next day, a white arrow on the dark floor, pointing toward the door.
__________________
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