Yesterday was Thanksgiving

 I could post about food or just turkeys or about the 5-mile race I did yesterday. But I'm going to get a little sentimental...

I take a lot of ride share, so I meet a lot of people when they're driving me around. yesterday when I was being driven home to Park Slope from Sheepshead Bay the driver showed me his phone and asked and broken English if this was the best route. I told him it was. I told him I usually trust Google because it knows where the traffic is.

When he showed me the map he also told me that is English was not good "That's why I show."I don't mind chatting with the drivers so I asked them where he was from. He said Ukraine.I have been here 7 months.."I asked him if everyone in his home was okay and he said 'Yes. We are from Crimea. "

His English was terrible and there was a lot of traffic so I didn't really see the need to continue the conversation. But I did look out the window. If you look at the map you'll see a little object in the upper left hand corner. That's the Statue of Liberty.She's quite visible from the Brooklyn Queens Expressway. From the BQE of Liberty looks kind of like the picture below that I stole from this website. Think you can always see the torch.

Sitting in the back of that Prius with the refugee behind the wheel I started thinking about the Statue of Liberty and Thanksgiving at the same time. Thinking about all my grandparents escaping Poland. I didn't say nothing else to the driver, but when I got out I welcomed him to New York. I thought about a lot of things. If you have a few minutes try to give them some thought as well

I only decided to post this because just now this all in the family clip came across the front of my computer screen.

Saved by a rainbow

I was having a pretty good day yesterday. In the morning I did some advocacy work at the lower end of Broadway. Literally 2 Broadway. I used to say I was going to go yell at the governmentBut I don't have to yell anymore. I think people are actually listening. After that I wanted to go check out a public meeting space that I was thinking of renting for a small meeting. It was along the Hudson River Waterfront at the West End of Chambers Street. The weather was wonderful so I just figured I'd walk on a diagonal for about half a mile. I assumed I would get a little lost and that would be part of the fun. Is that wasn't really sure where I was going.

Halfway there i saw a lot of daylight so I figured I'd cut through the open space. And then suddenly I realized what that daylight was.It was the old World Trade Center site.I've been avoiding that for a long time. Literally decades.

But I just put one foot in front of the other. I didn't have a problem being there I had a problem with the other people who were there. The tourists who are using their selfie sticks. I was worried I'd snap at them like I do want all the tourism Facebook pages I hang out on.I did not

as soon as I got near the reflecting pools my eye was completely focused on the rainbow in the water. 

I don't remember seeing anyone take pictures although everybody was taking pictures..... So I did also.

Traveling with a disability

Last week I was quite literally honored to be asked to speak at a self-advocacy conference. It was out in the middle of Suffolk County and I was asked to speak about what it's like to travel with a disability. I'd like to repeat that I was literally honored. I never was asked to do something like this before and I thought it was really cool that people thought of me. I've attended workshops on traveling with a disability and didn't want to think I could repeat them. So I needed to figure out how I would fill 45 minutes.I decided to tell a story of a project.After I introduce myself. I talked about the process of taking accessible transportation from my home in Park Slope to this conference in Ronkonkoma.

The conference was on Friday the 13th. On the Monday of that week I called Accessoride and asked them what I needed to do to take accessible transportation. I found out it came in two steps. First I had to get MTA AAR to tell both the Nassau (Able Ride) and Suffolk County (SCAT) the information that I was a if I user of their service. After that I would be able to book my rides.

Below are the two pages of notes I took as I was dealing with this project. To skip to the end I would have needed to have been picked up at 3:10 a.m. in front of my own house. I would have had to have arranged two transfers at shopping malls and Long Island before it was even daylight in order to arrive at 8:30 in the morning at the hotel in Ronkonkoma. I didn't do that.I took the Long Island Railroad and an Uber. Because I can....But people who can't do that stuff would be traveling all night long to arrive someplace in the morning.One of them was actually in the room with me when I was speaking. She traveled from Nassau County and had to leave her house 4 hours before the meeting started.

‘To ,,

1730 N Ocean Ave, Holtsville, NY 11742

On Monday I called Accessoride and ask them what to do. They told me that the first step was that they needed to notify both able and scat that I am an accessory user

On Tuesday I called accessoride and asked the phone numbers for Abel and scat

able 516 228 4000   scat  631 738 1150

The accessory operator gave me the phone numberFor Westchester Accessoride. Because she thought that was Suffolk County. Even though they didn't know what Westchester was in Suffolk County they told me I needed to callPacific County people and get a ride book from the transfer points to my destination. Then the Nassau County people to get a ride between the two transfer points and then accessorize to get a ride from my house to the transfer point

Scat hold music is cool rock and roll.They told me that my name was not in the system yet and to call access right again

So on 12:27 p.m. I called accessoride back and asked them to send the information to Nassau in Suffolk County's. And they said they would but it takes an hour for the email to get there.

At 128 Scat said it was not in their system yet. Currently on hold againThis time they told me I should call the Suffolk County office for people with disabilities at 631 853 8337When I called that number it left me a recording telling me that it does not work anymore and I should call this number and someone would call me back in 24 hours 631 853 8333

Have to 4 minutes on hold they're automated system offered to call me back.This was a rather complicated pressing of phone buttons.It's been 45 minutes and they haven't called me back. I think I'm going to dial the phone again

3:20 Gave up on being on hold with the Suffolk County Office of Disability. Calling Scat again

So the people at Scott said that it is possible that no one is working in the Suffolk County Office of Disability Services. And that I should call backAfter 9:00 Wednesday morning.

They called me backAt 4:00 p.m.After being on hold since 12:30.They weren't able to answer my question They told me someone would call me back within 24 hours and 15 minutes later they called me back and said I am in their system.

And I just realized that before 5:00 p.m. I should double check with Nassau County and make sure they have the information.

So that's it for today. The Tuesday before my Friday trip.TomorrowI have to call Scott and book a rideTo the hotel in Hopesville from the transfer point. I will tell them I want to arrive at 8:00 a.m.And find out what time they will pick me up at the transfer point.Then I call Abel Ride and get a ride fromThe Green Acres Mall to the transfer point.Then I call accessoride and book a ride to the Green Acres Mall.

Wednesday  8:10am

Calling scat And they told me the informationFrom the Suffolk County Department of Disability Service was not yet transferred to them so I have to call Suffolk County again. Hoping I'm not unhold for 4 hours again 631 853 8337  they open at 9….   

So at 9:00 a.m. I calledThe Suffolk County Office of Disabilities and got the same answering machine I got yesterday.But this time they called me back in 13 minutes. But it was only the call center I had to repeat my story and they said someone would call me back within 24 hours. When I told them I needed to book the ride today they told me they were only the call center and they can only give a message to someone who can help me.Let's see what happens...President creat

Ok, no call back but i just called  the got me!

SCAT to 1730 N Ocean Ave, Holtsville  Pu at sunrise mall  6:15 to 6:45

They said it has to be so early because I didn't book this 5 days in advance. I had no idea I could book anything 5 days in advance because accessoride is only 2 days in advance

84092

ABLE ride to Sunrise mall…….. And they told me to call after 3:30 p.m. on Thursday to find out what time they will pick me up at the Green Acres Mall. So I guess immediately after that I have to call Accessorize to book a ride to the Green Acres Mall

Thursday 3;44 calling able green acres at 4;15 4-446 And I canceled it. But I'm going to call Accessoride and ask them what time I need to be picked up to be at Panera Bread in the Green Acres Mall at 4:15 a.m.

Call access a ride..   ..  pu at   ….  2034 green acres mall And they told me the system is updating and I will get an automated call around 7:00 p.m. as to when I will be picked up. Since I estimate it will be around 2:30 or 3:00 in the morning I guess I should go to sleep now;n’And I asked them if I can use taxi reimbursement authorization to pay for this trip and they said no. That's only available to airports. That's not true it's available to train stations and bus stations 

Pick-Up ETA

3:10 AM

Class trips for grown ups

A long times ago  had a job in facilities management. My official title was evening coordinator of the student union building at the college I went to. The focus of my job was chaperoning all the big parties. Carrying around all the keys and calling first responders. But I didn't only work in the evenings and I had a lot of free time during the day. One of my favorite little jobs that I picked up on to keep myself busy was painting the art gallery between exhibits.After the artist would pack their stuff up, I would go into the art gallery with a big can of flat white paint and a container of spackle and make the room look brand new again. Sometimes I had to paint the whole room but usually not so much. Then I would get to attend the art opening that happened next. Wine and cheese and yada yada. But people would stand around and look at the new artwork. A little piece of me believed that they were standing around and looking at my paint job. I always manage to introduce myself to the artist and tell him how good they were work looked against my paint. The history of my connection to art started with this

Today some of my friends that I usually go running with decided to get together and get some culture. We took Metro North up to DIA Beacon, an enormous modern art museum located in an old Nabisco box factory. I enjoy an art museum by wandering without looking at the brochures. I like to take the art as it presents itself to me. Then I read about it.

To be honest a lot of the art in the museum went over my head. But I walked into one room and I got it. This first piece by Stanley Brouwn really resonated with me. 

The room was empty. But I knew it wasn't empty. I knew there was a plan there. And the caption reads 

"How empty is space? All the planets, thus including planet Earth, are in a constant "shower" of cosmic rays. In this space, just as in every building on Earth, it is also a case of "raining cosmic rays".walking consciously through the invisible cosmic rays in this space confirms, intensifies the presence of this space.

Stanley Brouwn 1970 / 2009

i instantly like this guy. For me it was about the paint on the walls. For him it was about the invisible stuff that was in the air. I got it

the piece in the next room was also wonderful. And it was the second piece by Stanley Brouwn.

The title of the piece describes it in its entirety. Each little card on the floor tells you how far you could walk in the direction of a certain place...

stanley brouwn

[walk 5m in the direction of belém

walk 5m in the direction of calcutta

walk 6m in the direction of chicago

walk 5m in the direction of khartoum

walk 3m in the direction of marrakech

walk 3m in the direction of oslo

walk 2m in the direction of shanghai

walk 2m in the direction of warsaw], 

it brought me joy to be in that room. Knowing that I can take three or four or five steps and be going in the direction of some place. It reminded me of my favorite inspirational quote by Author Ash. Start where you are, use what you have, do what you can. It's my mantra when I run marathons, now. And it was my mantra when I couldn't stand.

Arlington and Washington!

Last week I did things. Well one big thing that had 4 different things in it.I got to spend a few hours playing tourist in Washington DC. I attended a conference in Arlington Virginia. Part of the conference was going to the capital and lobbying for a cause. I also went for a run. I will kind of talk about these things separately

I took a 5:00 a.m. train out of Moynihan Hall so I can get to Washington DC and have breakfast with one of my old high school friends. It was really great catching up. And it was great to get the advice of a local on how to spend half a day in Washington DC. I got a train pass that was good for the whole day and decided to get to the hotel first and check my bag. I had to take the Metro to a stop called Pentagon. I assumed that was the name of a neighborhood.But not so much. Going up the escalator it was made very clear if you went to the left without permission you would get in trouble.I should have taken picture but there was a sign that very clearly said don't take pictures.At the top of the escalator was a very serious fence and a guy holding a rifle.I went to the left to get a bus to my hotel. After I left my bag there I got back on the bus to the Metro and went to DC. Having gone to all the touristy history and science museums as a kid and with my kids, I decided to hang out with the art. I've learned that it isn't important to see everything in a museum. Especially in art museum. When I saw this piece I decided to sit down with it for a good half an hour. At first I thought it was something new. But it was created in 1967. I only later noticed that her name was similar to mine. We are not related

I also took the Washington Metro. It didn't go unnoticed that this was a mass transit system that was built

all at once relatively recently. It is completely accessible for people who are mobility impaired and can't climb stairs.That did not go unnoticed. But I noticed another thing and I'm going to be bringing this through the attention of the New York City MTA.... This Disability sign this sign says that Federal law requires that these seats be available to passions with disabilities.....  Below is the sign that is in New York City buses and subways. It says" won't you please give this seat to the elderly or disabled." these are two different kind of signs.In Washington DC it lets you know that you should not be sitting there unless you're really need the seat. It needs to be available to those who need it.In New York City it's kind of an invitation to plop down. People in New York aren't looking around when they're sitting in the subway. They are minding their own

business.Not looking out for people with disabilities who might need the seat.So it's going to be up to the disabled person to ask for the seat.This is not cool. I'm one of the people that gets to talk to the MTA about their accessibility issues. I'm putting this on the agenda that these signs should change. Also perhaps an announcement regularly on buses that says please move to the rear of the bus and don't sit in the front seat unless you really need to

On the second day of the conference I woke up at 4:00 in the morning. At 5:00 a.m. I got in an Uber to the Arlington Bridge. I ran over that bridge and it took me right to the back of the Lincoln Memorial. I went up the stairs and realized that this is one of those rare moments that I was completely alone in this iconic monument. I took a picture but you can Google a better picture of the Lincoln Memorial. And then I ran across the National Mall. Past the Washington Monument and all the way to the Capital. Then I doubled back and ran to the White House.To the right or some crappy pictures I took. I would point out that I ran as the sucrose and Washington was quite clean and I felt very safe.It was a five and a half mile run and here  my Strava

I should also mention that I got to visit the Capital Building.But I didn't go in as a tourist. I had an appointment to meet with the staff of my congressman. There were four or five of us who went in to see them and I was selected to talk first. My role was to introduce the staff to what Guillain-Barre syndrome is. How it can happen to anybody.Because I am anybody.And I happen to be the only anybody that was a constituent of Dan Goldman.I immediately went off my script. Because the staffer mentioned that she never heard of Guillain-Barre syndrome.And the first thing I said to her was how happy I was for her that she never heard of this terrible disease. She was lucky, I told her that I sincerely hope that she never hears of this illness again. Then I delivered my speech.I don't want to go into the details of my speech here because it wasn't even that important.But what I do want to say was that when I first walked into the office I was upset that the person who we are going to talk to was a child. That's kind of how I felt. At first I felt we were being disrespected because the staffer looked like a college student. But after we spoke I realized that my first impression was completely wrong.My actual impression was that I was really glad they sent us a young person.She was clearly as honored to be in the room with us as we were to be in the room with her.

The top photo in the photo collage shows my team. We are the group that wandered the halls of the capital in order to influence our leaders. We were actually only in the Rayburn office building which is physically connected to the capital. But we will polite and greeted appropriately.We did not storm the building.The colorful picture in the center is AOC.'s door It was cool I had to take a picture

The conference was fantastic. It's the third time I've been to the GBS/CIDP international biannual conference. The first time I went to San Diego. The second one was in Jacksonville and this one was in Arlington. It's great to meet people who have my rare condition and at this point I'm kind of the guy giving other people advice.I even met someone who is running marathons while living with Guillain-Barre syndrome.

DFL

DFL, Dead Fucking Last. 

Not DQ, Disqualified. 

Not DNF, Did Not Finish.

Almost a year ago someone in my running club, the Peer Pressure Track Club, posted that it was just a few hours left to end of the lottery for the BMW Berlin Marathon. WTF, clickety click, I entered the lottery. The bad news was that I won. And then I read about this marathon. Unlike the New York City marathon where they reboot the finish line when it gets dark, in Berlin they enforce a time limit. last November I finished the New York City marathon in 8 hours and 30 minutes. In Berlin they shut it down at 6:15.The good news was that it's 6 hours and 15 minutes from when the last person crosses the starting line. The bad news was they put up fences along the way if you're not at that pace. 

The worst news was that I knew a friend who got caught behind one of those fences. At workouts he's been my rabbit. The even worse news was that I found out they don't really have an official time where they put up those fences

So I did the research I talked to people. I got advice. I did more research and I found out they added more fences.You had to be on pace to finish in 6 hours and 15 minutes from in the last person across the starting line. At both the 33 km, the 38 km, and the finish!. Lots of moving targets.

I have to say this out loud. I have to admit I was very concerned about getting cut off by these arbitrary fences. It was a big investment to go to Berlin. Not just for me, but for Achilles and for the guides that were coming with me. It worried me even more when I did a shake out run the day before the race, a four mile easy run that ended in the Olympic Stadium. It took me so long to get there that they didn't even want to let me in. But I had an epiphany.I knew how to sneak in. One guy telling everyone this was an exit and no one can come in. I knew enough just to walk around him and go in.And then they wouldn't let me down to the track. I just went around the people who were telling me not to go forward and I went down to the track.I looked at the arena. Tons of stairs no handrails. I heard people comment that they didn't build this very excessively. Of course they didn't build it with accessibility in mind The people who built this were also building ovens to put people like me in. So fuck that, I needed to get down to the track. I got down there and stood in the spot where Jesse Owens flipped the bird to ate off Hitler. When I stood there I knew i was going to finish the marathon the next day. 

But it wasn't going to be easy. I needed to use my head and my feet

I was assuming that it would take 2 hours for everyone to get to the starting line. That turned out to be incorrect. But it was okay.

I was able to finagle my way into the first wave..the third Corral of the first wave. I thought it would take me 15 minutes to get to the starting line and it only took me eight.The 10 miles of the race went just as I expected. I was able to maintain my pace and avoid all the faster runners passing me. There were a couple of close calls i got bumped but never hit the ground. Then I had to go to work. A week before the race I ran a 10-mile race in 17 minutes per mile. I did the first 10 miles of the marathon at that pace and just had to do 16 more..... Sounds easy

We made it through the first checkpoint where the announcer was telling everyone there was another one up ahead and we all had to keep moving.He was staying such stupid things like take your time but hurry up. Everybody knew what he was talking about.We had also done the math on a way to these checkpoints.We knew I had to make it across the first checkpoint with plenty of spare room because if I cut it close I would only have 45 minutes to run another 5K. I made it through the second check point with minutes to spare. That's when the memory started coming up. I don't remember people saying that I would never walk again, but they said it. But I do remember a lot of doctors worrying I would stop breathing. I didn't chat too much after the second checkpoint because I knew they could still shut down the finish line on me. But if you look at the top of this blog you'll see the picture of me approaching Brandenburg Gate. I knew that after that there was only 200 m to go.

If you look above you see the official results. That's the last page. It's impossible to sort and include old genders but that's only the males. And all the other genders beat me to the finish line. I was the second slowest runner to have their time recorded. But the person who was slower than me started ahead of me. I was the last person to receive a medal. Eliud Kipchoge finished first and got the first medal. Same as mine.  Here is the link to the inaccurate Strava map of my run. But I did finish in 7 hours and 50 minutes.  That's 46 minutes faster then my last marathon.

 

but I can go on and on in this post but I have to hit publish eventually. I can talk about how wonderful the city of Berlin is become. The walking tour, the architecture, the super complicated history. We stayed at the Scandic Horel on Potsdamer Platz. The architecture on that wide boulevard made me think they found the greatest architects in the most recent graduating classes and told them to go for it without restrictions. It turns out I was right. My hotel was where the wall used to be. A land of opportunity in so many ways.

I could write 10 blogs about what it's like to reconnect with high school buddy that I haven't seen in 35 years. 

And I must, must take my teammates that got me there.

Thanks Ariel for Achilles for arranging us to stay in the most amazing hotel. Who would think it would be great to stay in a Scandinavian hotel in Germany. But it was like living in an IKEA with better food.

I need to thank Joe for giving me great advice on how to find accommodations in unaccommodating race.

Jacky for giving up 5 days of her life, and then joining up with Tavi on race day to literally become team Michael. (We very look quickly lost track of how many ways Michael can be pronounced). The photo to the right was probably taken around while 25. But between miles zero and mile 10 they were literally my offensive linebackers. 

Sorry I didn't post this sooner but my nose keep running and interfered with my voice to text. No, I wasn't crying.

I could show up

Two big things happened in the summer of 1976. The bicentennial and I told all my friends to go to hell. For me it was the summer between middle school and high school and I realized that all my friends were jocks and I hated playing ball. I was bad at it and they didn't want me around either. So I had an epiphany in that I was going to meet all new friends when I started high school. And I did. But not the way I thought I would.

Gym class really sucked. I think it's a small part of a lot of movies they made about growing up.  I really was not into learning a little bit about a lot of sports that I didn't care about. Especially because I was a spaz. But I remember in the end of September the gym class was filled up with folding tables and all the coaches were there. I remember what they said very clearly." If you get on any varsity team you don't have to go to gym anymore. And we'll actually change your schedule around so gym is your last period class and your report card will say 95". I never learned what a varsity team was but it didn't matter. None of those teams would have me. They had tryouts and I couldn't catch or throw or hit a ball. But I remember asking the track coach what I had to do to get on the team. He said two words, "Show up." I could show up.

So I joined the Sheepshead Bay High School track team. We didn't have a track so we practice by running around the block. And I made a whole bunch of friends. I became friends with the kids that would skip a lap of the block and smoke some weed. The fast kids didn't care , we weren't hurting the team. And they were the one selling us the weed.. But that's all another story. Cross country meets  were in Prospect Park. I remember that we took the subway there and stopped at the McDonald's that still on Parkside Avenue. I remember the pond that is now called Dog Beach. We called it Cadillac Lake because there was a Cadillac in it for 4 years.I remember finishing the races and throwing up on the picnic house. Big Macs came out easy. I remember not medalling in every single race I ran in all three seasons for four years. But what I really enjoy remembering is that those fast kids gave me high fives when I finished. They appreciated my effort. Let me say that again.They appreciated my effort.

So fast forward a bunch of years. I stopped running during college but when I finished up my entry level job I moved back to Brooklyn. I want to start running again and I wanted to finish the New York City marathon. So I discovered the Prospect Park Track Club. It was the early '90s. And to the Chagrin of some of the old timers there were no qualifying standards to enter the club. I found another place where my effort was appreciated. I'm not exaggerating. I've been a member of the prospect park track club for over 30 years and have never ever come in the top three in any age group I've ever been in any race. I distinctly remember running a 5K on the eve of my 30th birthday knowing that it was my last chance to be in this less than competitive age group and possibly win. I came in last (4th) in my age group that day.But no one in the club ever thought of any less of me.

A bag weighing 9 lb that holds about a
hundred finishers medals

Back in high school I never earned a medal. You have to finish in the top three to get one of those. But in the past 30 years i have received a literal sack of finisher's medals. It used to be that you had to finish a marathon to get a medal. Now they hand them out for everything.I recently cleaned up and put them all in one spot.

To the left is a sack of finisher's medals. There's probably about 30 from full marathons and a couple of belt buckles from ultra marathons. I can't bring myself to throw them away but I don't need to display them anymore. I've run some races that I've been on the organizing committee of and I've actually given back my medal because I knew it would be recycled.needless to say these medals are in a big deal to me.

a photo of myself wearing
the medal I earned
for running
all of the summer speed series races.

But yesterday's medal was different. I didn't earn it for finishing a race. I earned it for finishing all the races.My Running Club, The Prospect Park Track Club has been organizing a series of summer races for years. Every other Wednesday evening at 7:00 p.m. go out and bang out of 5K.  This year, they we, decided to give out a medal to everyone who finishes all of the races.

he big deal about me earning this medal is that no one thought it was a big deal. 9 years ago I missed all the races because I spent the entirety of the summer in the hospital. There was some smart doctors who were worried that I was going to die. Apparently they were incorrect. I didn't just survive as seen to the photo to the right I lived. I showed up and finished all of the Al Goldstein Summer Speed  races in 2023. 

I think I'll display this medal for a while

Why is the MTA punishing people for being disabled? [Actually, you can fight City Hall, (I mean the state house)]

So it's the first of August, 2023. About 3 weeks ago I actually lost my MetroCard again. It was kind of a classic goofy move. I was overdoing it trying to enter the subway. Holding a hot coffee in one hand and trying to swipe with my right hand was tough.And I remember putting my metro card into my pocket next to my wallet, not in my wallet.Thinking to myself that when I take my wallet out later I have to make sure the MetroCard doesn't go flying.Well inevitably, when I went to go home the MetroCard was gone. Of course it went flying somewhere on the subway when I took out my phone to play with it.  I must have spaced out and left my metro card on the seat in the subway.

 I was all the way up in the Bronx so I took an on-demand ride home. In the backseat of the accessory van i called the general phone number for Access Ride and reported that my card was lost. I asked them what I had to do to get a new one and they said I just did that. All I had to do was report it was lost. It didn't take 2 weeks to get a new one ,,,It actually took 24 days.  But I didn't have to go to the post office and get a money order. I didn't even have to fill out a form.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>  April 2022.>>>>>>>>>>>>>>>>>

So in September of 2018 I was going to publish this blog post. I left it hanging around, just waiting to see if I needed a little bit more leverage and getting things fixed. I did not.I went to MTA board meetings and complained about the fact that after losing your accessory Metrocard you had to go to the post office and get a money order to get it replaced. Getting a money order was punishment enough. But if you lost your metro card three times you'd have to wait 120 days to get a new Metrocard. 

After I use my 2 minutes of yelling time to complain about all the things I listed below, one of the head honchos from customer service took me out of the room and asked me to explain more about what my problem was and of the head honchos from customer service took me out of the room and asked me to explain more about what my problem was. He took me seriously and after a few months told me they were going to change the policy. 

And just talking about it we both realized that the punitive part of getting a new card made sense when they first gave out cards to people with disabilities so they can ride the subway and take buses for free.Back in the '80s and '90s these werecardboard cards. That can be used by anyone because all you had to do was wave it at the bus operator or token clerk and they would let you ride. But now we use MetroCards with electronics on them and they're disactivated when you report them lost. But the policy never changed. They want to discourage people from losing them and were afraid of fraud because the old one would work forever But now the old one is instantly deactivated when you report it lost.

Over the past couple of years I have a few friends that had lost their metro cards and they asked me what to do. Not knowing that I was very intimately involved in the procedure of what to do. I told him just to call the phone number for accessory ride and ask them what to. The answer was much better than my old answer. It was simply "We will mail you a new one."

And that's what happened to me last week. I didn't actually lose my card but it started to wear out. When I called customer service they told me to mail it back and they would send me a new one. I asked them what would happen if I just said I lost it. They said they'd start the process that day to mail me a new one and not wait for the broken one to come in the mail. So I said I needed to correct myself I couldn't find my card even though I knew it was damaged. That was 8 days ago and I got my new card in the mail today. I didn't have to wait 180 days and I didn't have to go to the post office and get a money order.

The blog post below was in draft mode since September of 2018.I never had a start I changed.org petition and I never even had to publish this post to threaten the change.org petition.

Also because of my persistence back in 2018 I was approached by the president of Disabled In Action. She invited me to some meetings and now I'm a board member of that organization.

.........................................................................................................

Placeholder for link to change.org petition

I'm definitely pausing the distribution of any online petition at this point. After testifying before the MTA board yesterday the feedback I got was that this is going to be fixed.A high-level mucky muck came over to me right after I spoke to get more details about this issue so "it can be corrected". Also, on my way out of the building and assisted to a mucky muck told me that while I was speaking a lot of people in the room were already texting each other on how to fix this problem. (9/25/2018)

If you live in New York City you must be pretty familiar with Access A Ride Vans. Those big white and blue Ford diesel vans that drive people with disabilities  all over the city. These vas basically exist because years ago the disabled people of New York sued the MTA because the world's largest subway system was built a long time ago and has a lot of stairs. It was cheaper to give disabled people door-to-door transportation then to make the system work for all the cities residents. With access ride disabled people are able to be picked up and brought anywhere in New York City for $2.75. That's the same price as a subway fare, but since we can't get on the subway we get to do it in a van.

Before I became disabled all I knew about it was that it's a thing that everyone who uses it complains about. Once I became dependent on it I honestly felt it wasn't that bad. Don't get me wrong, it has an enormous room for improvement but once I figured out how it works it wasn't the end of the world. In any case I became part of a pilot program where I was able to use the Curb app and make a yellow or green taxi appear within minutes and only pay $2.75.

All access ride customers are issued in access ride MetroCard it's good for four trips a day and no fare is collected. Here are all the details on that. It doesn't say why New Yorkers with a disability are issued a MetroCard that gives them free trips so it just leads me to speculate.

• People with disabilities have good days and bad days and on a good day most of us would rather actually take the train or the bus. The MTA is helping some disabled people transition back to "normal".

AND /OR

• Driving people around door-to-door in vans is very expensive. The MTA saves a lot of money when disabled people get on a bus or subway.

Either way I very happy to take mass transit on the days I've been able to climb stairs. Last year I misplaced my card (by "misplacing"I mean I thought I lost it, but eventually it turned up) and after I thought I looked everywhere I called the MTA and ask for replacement. They told me to get a postal money order for $10 and send and mail it to them. I thought this was a little archaic, but many of the other people who use access ride might not feel comfortable paying online, so I went down to the post office.. I got my card within a reasonable amount of time and moved on with life. Unfortunately, in the past year this happen two more times. The third time it happened I actually found my MetroCard before they sent me my replacement. I was pleasantly surprised to find that it still worked and as soon as I got off the subway I called the MTA and told them I found it. They told me I was lucky because if it would have been of turned it off I would've had to wait four months for the new one to be sent to me. I thought this was a bizarre rule but I was happy that I dodged the bullet. However, two days later my card stop working. I called access ride and they said no matter what anyone said as soon as I said it was lost it needed to be turned off and could not be turned back on I had to wait 120 days. Below, is the rule that explains that.

Q. Where do I report a lost or stolen AAR MetroCard?

A. Immediately report a lost or stolen card by calling AAR at 1-877-337-2017.  NYC Transit will reissue lost or stolen  cards at its discretion after receipt of a $10 replacement fee.  After replacement of three or more lost or stolen cards, NYCT will impose a 120-day waiting period before reissuing another card.  This waiting period will also be imposed for the replacement of any subsequent cards.  Payments must be made in the form of a USPS® Postal Money Order payable to MTA New York City Transit and mailed to NYC Transit, Paratransit Division, Eligibility Unit, 130 Livingston Street, Brooklyn NY 11201.

I complained up and down the line that I felt I was being penalized for losing things.If I'm paying for the replacement why do I have to wait?  I honestly gave up on having an exception made for me because I was okay waiting 120 days. I was able to use the Curb app and when I'm able to bus drivers always let me on the bus because the card I have is not expired. Also, the staff at subway stations (including the police) open the gate for me when I show them my valid card. So, and by complaining about this policy I made it clear I wasn't asking for an exception I was asking for a change in the rule because not everyone who is disabled is going to feel that they could ask for help from the bus drivers and the subway staff to aid them in transportation needs. I really got nowhere with this complaining. Everyone thought I was trying to ask for an exception and reminding me that these were the rules.

I also lost my drivers license. Not that I drive anymore, but it was the enhanced federal version of the New York State drivers license. It was the type of card that can get me across the border into Canada or onto an airplane. I called the DMV and all I had to do was give them my credit card number and let them take about $21 for my account and I got a new one mailed to me. No trip to the post office no waiting 120 days if I lost it more than twice.

Then it occurred to me that  friend uses her credit card to refill her MetroCard at a vending machine and so do hundreds of thousands of people on a regular basis. If she were to lose her card she can report it to the MTA and get a prorated refund. Here's the website  it doesn't say anything about paying for replacement card or waiting 120 days if it happens more than twice.The first time you make a claim there is no charge. The second time there is a five dollar charge. The MTA will only efix your card twice a year.

And then there's the program where your credit card is automatically billed to your MetroCard works forever (or until the piece of plastic expires and then they send you a new one). Below are the details on that.

Q. What if my EasyPayXpress MetroCard is lost or stolen? 

A. You must immediately report your EasyPay MetroCard lost or stolen online at www.easypaymetrocard.com or call our Automated Telephone Service 24/7 at1-877-323-RIDE (7433). We will deactivate your card to protect you from unauthorized charges. Failure to report your MetroCard lost or stolen may result in unauthorized fares which you will be responsible for. You will not be liable for unauthorized EasyPay MetroCard use that occurs AFTER you notify EasyPay MetroCard, electronically, verbally or in writing, of non-operation, loss, theft or possible unauthorized use. We will send you a replacement card in the mail. Please allow 15 business days for processing.  

So here's the thing. Speaking for myself I can definitely say that people with disabilities are more likely to lose things than the general population. My disability affects my hands the most. I often drop things without knowing it. I've been hanging out with a lot of people with disabilities lately visual impairments and other cognitive issues. I'm pretty sure researches been done the disabled people or more likely to misplace things than the general population.

So why is there a trip to the post office and a 120 waiting period when a person with a disability needs to replace their MetroCard and all a person in the general population has to do is pick up the phone?

It's always there

Sometimes I like to remind myself that for the most part everything I've ever seen is still there. Well, the big things.  Last week I was reminded of that. Every Thursday night I meet some of my friends to go for a run.We meet and also what's the weather but honestly if the weather is really terrible we just eat pizza.But last Thursday it was over 90°I'm running around Prospect Park was not a good idea. But I had a better idea.Let's just go for a walk under the trees where it's cool.

We kind of meandered around the park.  On the middle of our walk we got to The Boathouse. I have lots of memories of that place. When my kids were little we used to drop in there on a regular basis to enjoy the Autobahn activities that was set up. I remember that they were very little and it was one of the first times I felt comfortable letting them out of my sight so I can enjoy a cup of coffee in a different room. The Autobahn Center as well as the coffee house are now gone.Prospect Park prefers to use that building for weddings and other events. I got to attend a wedding in that building. It was kind of neat.But now my newest memory of that building was just walking by.   

we also stopped to look at this cool bird.

and we stop to look at this cool tree

i don't want to sound too philosophical but every now and then if I can fall asleep I remind myself that that boat house and that stream with the waterfall and the frogs and the weird bird ....they're all still there.Even though it might be dark it's going to get light again and you'll be able to see these things.If I go over to that tree which is only about a mile away I can remember that my friends were looking at it

i only live a couple of blocks from where we all post for that picture at the entrance to Prospect Park at Garfield Place. I can walk back there whenever I want.  Might not be a bunch of us posing for a picture but I can go to that spot and remember what we did 

By the way my friend Larry took all the pictures I'm using here today. Click on the link below to view the Photo Album. https://photos.app.goo.gl/bQXWkUtdmFTsarta8

Before I was born

That's my great-grandfather. Charles Ring. He smiling and standing in front of his fruit stand in front of 136 Avenue C on the Lower East Side of Manhattan. Now they call it Alphabet City.

The picture is probably about 100 years old.

Below is the Google Street View of the same place. If I did everything correctly it is not the most current street view because that has a truck parked across the street.It's the second newest street view which shows that the building diagonally across the street from my great grandfather is still there

a couple of weeks ago I took a walk over there. I stood in the same spot my great-grandfather stood a century ago.

A friendly police officer took my picture while I held up the picture of my great-grandfather

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I took this selfie.

And this is the building he might have been looking at while he was selling that fruit and posing for that picture.

Charles was naturalized as a US citizen on June 7th, 1960 exactly 3 years before the day I was born.

It's hard to say what my great-grandfathers immigration status was until he became a citizen. But I do know that when he first attempted to immigrate from Poland because of extreme poverty and prejudice he was denied entry into the United States. Eventually he was permitted to settle the United States with my grandfather and then my father was born.

my father's family. circa 1940

My grandfather and father didn't just sell fruit They sold all sorts of stuff. Their descendants became doctors and lawyers and professors. The American Dream.

Till the left is a really old family picture. That's my dad in the middle. Behind him the guy in the dark suit is my great-grandfather Charles. And off to the right a little bit more in the lighter suit is my grandfather David.

My descendants came to the United States because they were living on dirt floors in Poland and they probably would have been exterminated by the Nazis if they would have stayed. They came to America because it's the land of opportunity. But not just opportunity it was a chance to live. That hasn't changed too much Millions of people are coming here every year because the alternative is a horrible life or none at all. I remember how my family got here every time I get in a taxi and the driver hardly speaks English. I am always nice to them because I know that their children are going to be my children's doctors and lawyers.