NO HELP FROM HELPLINE, NO HELP

There was an ad on tv for the helpline. National Helpline Day. So I called the Helpline to find help shoveling.

I had previously called Fatih in Action, that, without the great guy who has now retired, is less than helpful. 'We only have people who do rides,' the harried sounding woman said. This wasn't true when Tom was there, because they had arranged for people to come help me before. But Tom is gone.

The Helpline woman asked me about my location, zip code and age. When i said my age, she said i was too young to get help. 'I'm paralyzed and in a wheel chair', i said.
She sputtered and then raised her voice,"Why don't you ask your neighbors"!

This hurt and then infuriated me. If i could ask my neighbors why would i call the helpline? But more to the point, if i had decent neighbors, which i don't, really, I wouldn't have to ask them..
And after having identified myself as paralyzed and in a wheelchair, what more did i need to say?

As I began to say these things to the helpline woman, she hung up on me.

So I wrote a letter to the Institute for Human Services that I sent to three people, the head and a couple of folks in the 211 Helpline Department since they listed only names and not responsibilities.

The reply:
Thank you for contacting 2-1-1 HELPLINE with concerns about how your call last week was handled. It appears that the person who took the call was not familiar with the resource(s) that might have been able to assist you at that time.

I have done further checking into what is available and I have learned that NY Connects does now have a list of people who may be available to do snow shoveling. You may reach them at 607-664-2298 or 866-221-7324.

I realize that snow shoveling may not be as critical as the weather warms but if there is an organization that can provide the human services you need we will do what we can to assist with making a connection.

My apologies for our having missed this referral when you called.

Ms. X

Thanks for your reply.

It wasn't only the lack of resource identification --- it was that blaming-the-victim tone that made the experience so searingly memorable.

If my/our neighbors helped, there would be no need for social services, so to my mind
it was obvious that I wasn't being assisted, which is why I called.

A simple "I don't know" would have gone further than the turning-the-table tact.
I know something is wrong with me. I am paralyzed and in a wheelchair. I need
no further reminders of my disability.

When I called the number you've listed, they identified themselves as Office of the Aging/RSVP. I asked if they could connect me to NY Connects. They did. However, as this was a bit confusing, perhaps you could, in future, give the direct dial for NY Connects, or if there is none, ask the phone answerer to include that name among
those that they say when answering the phone.

Regards,

Anyway, I connected to the designated folks who said they would send me a list of possible people. They e-mailed me a form to sign, which i did the same day and e-mailed back. They said they would send me the list of providers the next day. It is a week later and I STILL don't have the list of possible people. I've emailed them twice and gotten no answer.

I was told about a woman who does things and called her. She was leaving town for the holiday. She gave me the phone number for a college kid, who came on Saturday and did a half ass job of removing the now icy snow from the most critical place -- at the base of my ramp... It cost me $10.

My front is clean and dry and there is still not a clear path at the back for me to get out.

He was nice enough and told me he liked classical music -- I confused him by saying what was playing was opera and that it wasn't the TV but the radio and that it comes on every Saturday afternoon.

So much effort for such a little result. It rebreaks my heart that I thought the lesson, if any, was about asking for help. But I exhaust myself asking, trying to get, then still have to pay and don't get the result I used to be able to get myself, in half the time, with no expense.

Hurry, spring.

Picking Poor People's Pockets

I so want to relate the backstory, but I'll restrain myself slightly and start with the current one.

The metal panel that acts as a container/or guard that keeps the flesh from being scrubbed and burnt off the tender part of my thighs is cracked from its thin connector
on one of my arm rests.

Now when my tires were replaced and they rubbed against the armrest/guards I thought to enable my suddenly incredibly difficult mobility by just flipping the arm rest back or removing it. But since i can't feel, it wasn't till the end of a day of this that i felt dampness by the side of my leg and saw bloody tire tracks branded on my right thigh.

When i had asked the tech how much it would cost to replace the part, he told me
$200, not including labor.

After going to the dentist and having to struggle to put the whole assemblage back together, I determined that i was ready to go hungry a bit-- it's warmer, so i can eat less-- to buy this part.

Turns out it's $70 --- multiples less than $200.

Lest you think maybe he thought it required the whole arm rest or some such---
replacing the whole arm rest is $135.

Now back story -- i said the tires rubbed when he put them on, that it felt tight.
When i called the base because it hurt me to wheel around, they were going to
charge me mulitiples of what it cost for him to put the tires on -- I think the estimate was over a 100, just to assess/ determine a solution...

Now i know them as liars and thieves and pray that i need no repairs and if i do, i can effect them myself or find another supplier. (i did find another supplier
in the next city, but they never bothered to return my calls and i've just built up muscle and shred space on the new tires so that i can wheel a bit more freely)

I am awash in relief and hurt and anger.
I would have done this six months ago. It is wearying that every SINGLE thing I am told must be examined, investigated, can't be trusted..... like my finger (another story about avoiding unnecessary surgery).

SET BACKS & STUPIDITIES

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!