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.

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". 

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

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 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.


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

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.

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

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
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.

Wednesday, January 23, 2008


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


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.