Wednesday, December 09, 2009

Shoveling Snow

It snowed and stuck.
My neighbor used to shovel for me, but since he
flipped on me and no longer mows for me
shoveling, too has stopped.

A distant friend sent me the name of someone
to replace the mowing, who also does snow removal.
I called this man and he wanted $30 to $40. I
told him, honestly, I used to pay $10. I'm on the corner,
but it's a small city lot. I asked him if he would
do it once for $15, no, he said, he'd come by in twenty minutes
and take a look but the best he *might* do is $20.

After twenty minutes the door bell rang.
It wasn't the guy.

Two lovely
young girls of color were at my door.
This is very unusual where I live.

Do you need help
with your snow? the the taller one at the door asked.
Yes thank you I do. I laughed. My heart so light and
happy. This was me, once, trudging around our neighborhood
in Queens, looking to make some money.

How much do you cost?
How much do you want to pay? the second
one, leaning on her shovel, asked
How about ten dollars? I said.
They both smiled and said" fine!"
I asked if they were sisters.
no they laughed.
O I said, then I better go find
two five dollar bills.
I gave them both $6
and they shoveled around my house
and both my ramps, and the access

About an hour later the guy called
and asked me my address.
I told him and said I expected him
awhile ago.

Well decided to grab a bite to eat.
(I had called him at 2 p.m.)
I drove by and it looked done.

Yes, I said it was.
Don't you think it
was a $10 job, I said

Well, maybe $20 to $25

I'll keep you in mind for next time I said.

I hope Latisha and Cheyenne stop by again.
I thank God for them.

Wednesday, December 02, 2009

No Help from the Helpers

I don't know why those designated to help are often the worst humans. It has been so for me. Today I spoke to the owner of the medical supply place, telling her how I had put in an order
two months ago for wheelchair wheels.

She began the twenty questions, so in disbelief she was that
her employees in this city had neglected me.

When I began to remember names and even described
how one employee browbeat me about my equipment-- there's no such thing as solid tires-- well I'm sitting with a wheelchair with solid tires, I had said
and how yes, someone had come to my house to measure and CONFIRM what i had
named and described--- then the owner said 'o so and so is very outspoken'
at which another me would have sucked her teeth. If you KNOW THE WITCH CAN'T COMPORT BUSINESS WITH CIVILITY WHY LET ANSWER THE PHONES?!!!

and there's no record of your
order in our computer system she said and i told her how sadly I was used to impolite behavior, but I found it unfathomable that it was two months later and my new tires and new armrest were not yet here and installed.

Fortunately Everything Medical has a website, which is how I got the message through. That's just today's story of abuse and denial solely because I can't walk.

Friday, September 11, 2009

HELP: followup

I never heard from the man who browbeat me about my car.

I held my tongue and ire for nothing because I never received the assistance.

Letter to Philips Lifeline

After spending 3.5 years and thousands of dollars with you, you lost me as a customer for $5.

I found a local service in my area for $20. I was paying Lifeline $35 and asked for a reduction and was persuaded to remain with Lifeline for the comparatively high $30.
I was told that my billing would be reduced $5
It wasn’t.
I called on July 17.

My recent Amex statement that showed me being billed on July 20 with a date of July 17 for $35.

I spoke to Wade on July 17
On August 17 I called and was told that my billing date was the 16th--- though my Amex bills have shown the 17---
No apology was offered, nor was a reimbursement offered. I spoke with two areas—billing and customer service.

I think your behavior is unconscionably wrong and rude.
I am therefore discontinuing my relationship with Lifeline
I don’t understand why my years of regular,automatic payment counted for NOTHING. I will be sure to tell others who are disabled to go elsewhere for service.

Thursday, July 09, 2009


A man calls to help me. And calls again and again. I can never get
to phone by the time his perfunctory messages have ended.Today he
wakes me at
10--- I had been up until 6 a.m. and says he will come by at 11.I
calculate the amount of time it will take me to get in and out the
chair, on and off the commode, washed and dressed, cover my eyes and
snuggle deeper. The door bell rings at 11. This wakes me
again. He never left a return phone number because, since he is the helper
and I the helpee- I am not allowed to know his phone number. The
Faith in Action coordinator calls and of course we talk because 1.
I am now awake and 2. He left a phone number.

I make an appointment to talk to the man at 3. We speak. He complains about how
hard it is to get a hold of me. I tell him, it isn't hard, you have
to speak long
enough for me to get to the phone-- I am paralyzed and in a
wheelchair. He wonders if the door bells
work. They do I tell him, but I nearly NEVER answer the door unless I
am expecting someone.

He quizzes me-- how do i handle all the folks I must be in touch
with? I should roll around with a cellphone on my lap. I have a cell
I tell him in my wheelchair bag. He asks for my cell phone. I do a
quick calculus of what i need and the road to get it and give him my
cell phone number.
10 minutes after we are finished talking he calls me on my cell to
tell me something I told him was so, was so ( car inspection before

When he calls it says RESTRICTED. I usually don't answer RESTRICTED
because it costs me money. But I answered because I knew it was him.
I tell him this. He admits that his daughter feels
the same way. And that next time he will call from his cell phone. Thing is
this will now reveal his number to me. However, his secret is safe with me.
I'm the paralyzed woman in the wheelchair in need of help. This is hell.

Monday, June 22, 2009

June 16

4 people here to tell me there will be no handicapped parking sign in front of my house. allowing the louse who blocks my concrete landing pad to continue. But I gave a piece of milkweed fluff paper to the City Manager, as he was from papermaking Maine. After talking about our wealth of wondrous weeds, I showed him my Cherub, vat, M&D, press, process. This made a bitter moment sweet. He deemed the paper "really nice" 2 bus companies and
a cold cop . sigh

Later my neighbor told me there was a handicapped parking sign just down the block.

Saturday, June 13, 2009

More Denial

The physical l therapist told me she is closing my case out as there is nothing she can do for me. What she proposed was that i spend a couple hundred dollars to get my (unused) motorized wheelchair adjusted so that i might possibly be able to transfer to it without help. I said i couldn't gamble away money... if had some assurance or preview or trial then i would do it. What about standing, leg manipulation, etc? No answer. Case closed.

I want to stand. I want a stander

Tuesday, June 09, 2009


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?!!!


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.


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......


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.

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


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.

Monday, March 16, 2009


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!

Three people had to lift me up and put me on the table
and the man held me while the doctor looked at my

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

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.