Pete, Rudy and Vinny Are My Angels ; Kudos to John Liu

Kudos to NYC Comptroller John Liu


NEW YORK, NY - City Comptroller John C. Liu stated the following on the approval of the "Taxi of Tomorrow":

"The failure to make the entire fleet wheelchair-accessible is a wrong-headed decision that should concern all New Yorkers, not just the current 60,000 wheelchair-users ihould have beenour City. People can become disabled at any point in their life. Perhaps if the Mayor required the use of a wheelchair he would see this issue differently."
Background: Comptroller Liu's testimony to the Taxi and Limousine Commission: http://comptroller.nyc.gov/press/2012_releases/pr12-09-100.shtm.

When the ALS clinic staff at Cornell met me at the door at my appointment on September 14, they had already heard from me for months about my wheelchair.  The rep of the vendor kept promising me that he was "working on it" and very soon, all my wheelchair problems would be over.  At my June appointment at the ALS clinic, the rep wasn't present and I learned he had left the company.  It all made sense.  When some people know they will be leaving a job, they often leave loose ends hanging.  I was assured that the company had hired someone else and I figured it would take time for this new guy to clean up the mess left by the old guy.  So when I came for my next appointment on September 14, Jenn from MDA informed me that the following Monday [September 17], I would have visitors to my apartment -- Pete, the new vendor rep, a man from the wheelchair manufacturer, and Pete's boss.  In the meantime, Pete was in the clinic that afternoon and he spent a lot of time with me, the occupational therapist, the physical therapist, and my wheelchair.  Together we all figured out what the issues were.

 So the three men came on Monday and promised they would get the wheelchair to a more ideal vehicle for my needs, with a single footrest that lifts up, rather than two single footrests that were constantly breaking and came out to the side like wings for me to stand.   They brou ght the wrong footrest.  So they had to take the wheelchair away to their shop overnight and I had to use the manual transfer chair.  This means that I couldn't move on my own and there is no headrest, tilt or recline.  They promised to get the wheelchair back to me by 10:00 am.  Of course the next moning came and went.  With every passing hour in that manual transfzed er chair, I was uncomfortably waiting for the chair to come.  It finally came with a technician at 2:30.  I was not the happiest camper, but so relieved to have it.  One thing they did as a result of my joking around when they asked before they took away the wheelchair, "Now before we leave, is there anything else we can do?" and I said "If you can make this wheelchair narrower, I would be very happy".  It seemed that the wheelchair itself was no wider than the old one; the armrests were wider and the part that stuck out from the side footrests made the chair wider.  So I was ecstatic when I got the wheelchair back, that it fit into places it hadn't, including under the table that holds Chelsea's bunny cage.

Untill four hours later-- at 6:30pm when I did what I have always been instructed to do  when straightening myself in my wheelchair -- I tilted back and pushed against the footrest.  It so happens that the footrest was in the "up" position, and when I pushed down on the footrest, I heard a click like something breaking.  And I couldn't get the footrest back down.  I could get out of the chair but couldn't transfer anymore.  So back in the manual transfer wheelchair I went.  In the meantime, we found a bolt on the ground, and the bolt had snapped in two. Great!  No footrest again and I can't transfer, so I have to be in the transfer chair.

The vendor couldn't send a technician until Thursday morning.  The tech got he footrest down again so I could transfer and use the motorized wheelchair again, but he told me to fold the footrest up and not use it until they came back to fix the bolt, which shouldn't take long to receive because it was still under warranty.  Apparently the bolt that snapped off is a safety measure to get me to avoid banging the wheelchair and the footrest and thereby damage the wheelchair frame.  Good to know, but too late.  So far I haven't had use of a footrest for a whole month and it is really hard.  The neck pain I have been having, is starting to radiate to my upper back, and my patience is wearing thin.

Update August 30, 2010-- Bye-Bye Summer

Well summer is at an end.  I am grateful for the three outings I had this summer, which was really a hot one.  At the beginning of the summer, Louise invited me to the annual barbecue at her church, St. Luke's, in Forest Hills, on a beautiful summer evening.  In July, Judy came out and we took Access-a-Ride to the Rockaway boardwalk. It was pretty empty on a Tuesday, and Rockaway is still very depressed, with a lot of boarded-up businesses right next to the beach on Beach 116th Street.  It reminded me of my home town -- Long Beach -- before it got the HUD grant which facilitated its revival.  There was an SRO right off the beach and therefore some shady characters on the boardwalk.  Originally, we were going to go to Brighton and have lunch in one of the Russian restaurants on that boardwalk, but I thought it would be too far, and there is a city bus from Rockaway to my neighborhood in case we had any trouble with Access-a-Ride. But Access-a-Ride was impeccably on time, and I'd forgotten what a long ride it was from my house to Rockaway, along Cross Bay Blvd and through a long stretch of nature preserve.  I wish I had gone with Judy's original suggestion of Brighton, which would have taken the same amount of time over parkway.   Oh well. But it was hot and the sun was out, and I knew it would be my only opportunity to see the ocean this year, so I was grateful to be there. And Judy is great for having gone with me.

My third and last outing this summer was in mid-August. Jenny Vidoni, who works at MDA in Manhattan and coordinates the MDA/ALS efforts in NYC, came out to visit.  I know Jenny from our support group at All Souls Church, which she co-facilitates.  I was just so grateful that she came out because Manhattanites hate to come to the outer boroughs.  We walked to Flushing Meadows Park, and visited the Zoo.  We had a great day.  Jenny is used to dealing with all kinds of disabilities, so it was fun, and extremely comfortable.

I was invited to be part of the Consumer Board of Concepts of Independence, Inc.  Concepts is the company that runs my Consumer Directed Personal Assistant Program [CD-PAP]  This is something that disabilities advocates fought for, along with the Americans with Disabilities Act.  The CD-PAP allows me to remain in my home and select my own aides [personal assistants], rather than depend on an agency.  Those of you readers who have been following me since the Caring Bridge page I had, know what a triumph it was when I got onto the Concepts program.  The agency I worked with before, through which I met 3 of the aides I have now,  was less than accommodating, sending all kinds of aides to me who were less than satisfactory.  I was robbed of a brand-new digital camera, and plenty of cash.  Some of them were so scary, I was afraid to go to sleep at night.  Eventually, I got a team of aides whom I could trust.  But when any of them called sick, the agency sent strange aides instead of ones I already knew.  It's very difficult to keep training strangers about what to do, especially since I can't speak.  And some of them were intimidated, frightened, or just plain lazy.  I had an assortment of ladies who I am sure were nice people, but they resented being sent to such a "difficult case" and took their perceived misfortune out on me, or just fell asleep, snoring, in my big comfortable chair.  My complaints fell on deaf ears, with the agency supervisor often telling me "I have a hard time finding aides who will go to you at all".  That didn't make me feel very good, and to top it off, I had a nurse who would come once a week and tell me "I have a hard time finding an agency who will take your case on a long-term basis, because your case is so difficult", which made me feel even worse. The day I switched to Concepts was a happy day.

Update

I am really excited about a new Indian restaurant in town. Sajni is on Queens Blvd around 65th and they have the most awesome buffet for lunch -- inexpensive! The owner knows all his clients, and they play Bollywood videos while you eat! And most of it is soft food that is easy for me to eat! I am in love!

Unfortunately, my other favorite newish place, Tierra Sana, lost their hold and couldn't stay afloat. It was good vegan food, with wi-fi and very East Village decor, but it was a little pricey. I couldn't manage to get people to go with me, probably because of the price or maybe too esoteric. Obviously not enough support from the neighborhood. That's why I am happy to see such support for Sajni.

Summer is finally here, about 2 months late, but I'll take it. I am enjoying myself on "concrete beach" in front of my building -- no sand or ocean, but lots of people-watching and sunshine, squirrels and birds.

Thank you for all the feedback on my post of 7/26 re the ad for MND/ALS with Sarah Ezekiel, which was made for British TV. In case you missed the post, you can chcck it out any time and follow the link to watch the video

In the meantime, you can follow me on Twitter
and/or "friend" me on Facebook

Kew Gardens Gets a Lift -- Subway Accessibility Moves Closer to [My] Home

ferncohen.com
Check this out!
There is now an elevator in front of the office building at the corner of Union Turnpike and Queens Blvd, to the E and F subway! I know I don't live in Kew Gardens BUT it still excites me for two reasons:
a) Forest Hills and Rego Park can't be far behind
b) I can take the Q60 bus there, and board the subway to one of the many accessible stations in Manhattan......this would be faster than taking the Q60 snail-bus to 60th and 2nd and THEN boarding a snail bus elsewhere....