Thursday, February 1, 2024

Boogie In Your Butt (nsfw)

i originally published this blog a little over 10 years ago. 10 years ago I had my first colonoscopy. This morning I had my second. A few things have changed in 10 years. First I learned from my mistake 10 years ago in that you shouldn't walk out of the hospital and go directly to the hall cart. Lying to the nurse's 10 years ago and telling them my wife was waiting for me outside and then inhaling a chicken and rice was a big mistake. 10 years ago I got on the subway and only made it one stop before all hell broke loose. Today I went home and had my daughter make me some eggs. Also, she actually met me in the hospital so I didn't go home alone. today I had my procedure at one of the many branches of NYU Langone Hospital. I went there because they have 99% of my medical records because they're the hospital I spent most of my time in recovering from Guillain-Barré syndrome.

10 years ago I had the procedure at Mount Sinai Hospital. The Beth Israel branch on 2nd Avenue and 17th Street. They told me to walk in the emergency room entrance.I didn't know that a few months later I'd be sent there and would walk in the emergency room and be admitted directly into intensive care.

10 years ago it was the first time I underwent any kind of anesthesia. I've lost track of how many times I've been put under since then. Today I knew enough to shave the inside of my armpits so when they put the IV in it wouldn't hurt so much when I took the tape off.


I think I'm still the guy that exists at the edge of the bell curve. Today I wore two bracelets. I've had the blue one on since September when I ran the Berlin Marathon. I'm going to wear it till it falls off or until someone recognizes that that doesn'tKnow me already .The other I took off already. But it says I'm a FALL RISK. I can be both. A marathoner and a trip hazard. I'm also the guy who's taken accessoride to the starting line of an ultramarathon.

Below is everything I wrote in 2014..........










I heard this for the first time in my car.  I was with buddies and we had to pull over we were laughing so hard.

That was a while ago.  Things just got real.

Since I just turned 50 I am supposed to have a colonoscopy.  I subjected myself to this because it is a lot better than dying of Colon Cancer.  The colonoscopy itself was not so bad.  Basically you lay down with your butt sticking out of a gown in a very crowded little room.  You get a shot and wake up somewhere else an hour later.  A nice nurse brought me a cup of orange juice.  Twenty minutes later I walked out the side door of the hospital and directly to the Halal guy for a chicken and rice.  If it were above average I would have eaten another one.  Then I meandered back to the subway for a ride home.

Here are some photos  I left them small to protect your eyes.

.













Then I had to sign the bottom of a form so that the medical staff know I read this.

Because air was put into your colon during the procedure, expelling large amounts of air from your rectum is normal.

I could have used a note for the subway ride home.

Oh, the procedure itself was a piece of cake compared to the prep.  No solid food for an entire day. (No, melted ice cream is not solid food, I asked).  In the afternoon, I went for a walk and kept tripping over myself to not go into every pizza place.

Then I had to drink The Gallon of Stuff. People told me it tasted horrible, but I did not think it was so bad, then again, I am used to drinking Gatorade.

Now I know where the expression Holy Shit comes from.  It was kinda weird to have exploding diarrhea and not be sick.

Add caption

Tuesday, January 30, 2024

For safety sake?!?

I go to MTA board meetings and attend committee meetings and discuss accessibility in the New York City mass transit system. A lot of other things are discussed at these board meetings that really I don't think have anything to do with me. But this week they were talking about the installation of these safety gates that were installed at the 191st Street Station on The 1 Train. I figured I'd go check them out.

Well I knew I wasn't going to go visit a mass transit station like the JFK Air Train on the air train people are kept away from the platform the same way people are kept out of elevator shafts. It's kind of impossible to fall into the platform just like it's impossible to walk into an elevator shaft. Things have to go really wrong for that to happen. And then there's the doors at Disney World's monorail.It would take a lot of focus to accidentally walk onto the track, there.

So, when I went to 191st Street I really didn't expect to see the gold standard that we have at JFK nor the moving fence at Disney World.I understand, that to separate the platform in the same way we are separated from elevator shafts at almost 500 stations and thousands of platform would literally cost trillions of dollars. But what I found there was truly underwhelming And probably more hazardous than having nothing there at all.

Simply bolting a yellow fence into the ground to try to discourage people from walking towards the subway platform where the door will not be isn't going to stop anyone from falling or being pushed onto the tracks. And in fact I think they are actually a trip hazard themselves.I can't pretend to speak for how the visually impaired navigate the subway system. Perhaps I can update this blog with input from one of my visually impaired friends. But I can't speak as someone with mobility impairment. I see the fence and while I'm walking around it I would be worried that I would trip over the bolts that hold it into the ground.The one positive thing I can say about the subway system that it often goes unsaid is that there's no potholes on the sidewalks and platforms. For the most part it's a smooth surface. There are no metal plates sticking up out of the ground. Except, now at 191st Street. As the train approached the station I was easily able to see the fences and knew I can walk around them. And the train wasn't very crowded so I was the only one getting off. But if I was getting off the crowded train for the first time, it would be very likely that I would walk very close to that fence and trip over the bolts that hold it into the ground.

Maybe the MTA only wanted to spend a few $100,000 on this pilot project. But maybe a few hundred grand more would have been well spent on digging a little trench, so those brackets and their bolts could have been smoothed out. I know the MTA didn't want to spend a trillion dollars walls that would move when the trains actually rolled in. But what they did at 191st Street is worse than doing nothing. I hope this pilot and soon for safety sake.

above is a picture of the downtown platform
 of the 191st Street one train taken from
 the uptown platform. It shows yellow
 fences evenly spaced that are
 intended to protect people from falling onto the tracks
above is a close-up photo of the
bracket that holds the fence into the platform floor.
It looks like it's raised about half an inch and the
bolts themselves are raised in another half an inch


but here's the thing the MTA can do if they're concerned with safety. They can stop parking their vehicles in accessoride bus stops. Yesterday, well if you my friends and I were protesting in front of two Broadway we noticed an accessoride vehicle completely blocking the street for about 10 minutes so it could unload a passenger who was using a wheelchair.The reason it had to block the streetWas because the accessory bus stop that is place directly across the street from the MTA headquarters was completely blocked by government vehicles.One of them was a police car and the other one was in Accessoride Supervisor's car. 

above is a photograph of a Toyota Camry parked
in an accessoride bus stop. It's license plate is MTA AC 1830
I know that is is a accessoride supervisor's vehicle because when I went across the street to take a picture of its license plates the security guard or police officer who has been assigned to keep an eye on us while we protest came over and asked me why I was taking a picture. I told him because it's blocking the accessory bus stop which is causing that accessory vehicle to back up traffic all the way the city hall. And at the same time making the person who was using a wheelchair exit onto the street instead of the sidewalk. He told me if that supervises didn't park there someone else would so they park there. I began to tell him that that logic is completely faulty but I didn't want to get into an argument with him.


I know that the MTA doesn't have control over enforcing bus stop regulations. That's the police department and the Department of Transportation. But they can't tell their employees not to stop for park in any bus stop. Especially one in front of their own headquarters that is designated for people with disabilities to use.
 

I just updated this to add my 2 minutes of testimony on this subject to the MTA board on January 31st, 2024. 

I start speaking at 22 minutes and 30 seconds. Right after Robert De Niro made his 2 minute speech


Wednesday, January 24, 2024

Richard Traum NOVEMBER 18, 1940 – JANUARY 23, 2024 -

Dick Traum died yesterday. He was the founder of Achilles International. Achilles is an organization that kind of has two functions. Their primary function is to help people with disabilities train for and compete in athletic events against people who are not disabled. There are other function is to give people with different types of disabilities a chance to hang out together. {i might be making all this up, I'm not looking at the Achilles website to see what their goals are. This is what I think their goals are / should be and I did read the last two books that Dick wrote}. If you're looking for the official obituary for Dick Traum you can find it here.

I want to use this opportunity to talk about how of Dick Traum helped me get better. It wasn't just the stuff he did by creating Achilles. The model of bringing together athletes and people who want to help athletes really clicked for me. Now I'm out there recruiting guides. I tell people from my "other" Running Clubthat if they enjoyed cheering or helping organizing races they would really enjoy guiding a disabled athlete in a training run or a race. If you feel good about being one of 50 people thousand people run a race Imagine how good you'd feel if you are the one person who makes it so that one other person can run that race. Also, the friendships I've made here oh without a doubt greater than any I've made anywhere else.

Above is a photograph of Dick Traum in his three-wheeled handcycle.
It is opposed to picture taken in front of the reservoir in Central Park
But I'm done talking about running. I want to tell the different kind of story about Dick Traum and how just knowing him made me better. Back in 2017 Dick Traum was still the President of Achilles International. Dick Traum well suddenly on different sides of a political fence. A really big fence. And everyone I knew was on my side. It affected the management and leadership of Achilles International. It was ugly and I don't have to talk about it here now.But I really wanted to let Dick know what I thought of what he did. He often came to the Saturday morning workouts in Central Park I would see him there and I had a whole speech prepared in my head.

I didn't have an opportunity 



But I did go up to Boston to cheer for everyone at mile 18 in the 2018 marathon. That year the weather was epically terrible. It's basically a point to point race and it was a headwind blowing sleet and rain into the faces of the racers. Hours into the race Dick Traum rolled by in his racing wheelchair. It was low to the ground and he was being splashed with ice water as the runners passed  him. I cheered for him like I said for everyone else and I don't think he heard me.

Photo above is a picture of people cheering
in the rain for people who are hand Cycling in the rain

A few weeks later on a beautiful Saturday morning I was at the Achilles workout in Central Park. Dick Traum was there doing his workout and there was a moment where it looked like I can walk over and tell him what I thought of his politics.But instead my mouth started doing things that my ears and brain weren't ready for. I was going to walk over and tell him what an asshole I thought he was, but instead...


me: I was cheering a few weeks ago at mile 18 at the Boston Marathon and I saw you go by and I think you're the most badass guy I ever met.

dt: Why would you say that?

me: Because you was soaked through to your underwear with ice water and people were running by and splashing you. If you would have stopped there or not even have started. You look like you were pushing through hypothermia.

dt: Well, once you soak through your underwear what's the point in stopping.

me: yeah, that's what badass mother fuckers say. It's a pleasure to know you, sir.

I shook his hand, again and walked away feeling really good about what my ears heard my mouth say.

I know it wasn't your job, but Dick Traum, you have inspired me to be a badass motherfucker.

Rest in Power 



Editing to add this: it's been suggested to me that I reach beyond politics and talk to some of the people I happen to be related to. I would if they had any redeeming qualities. 



Thursday, January 18, 2024

Choose a carrot

Above is a photograph I took from my
seat at the entrance desk.
 It shows about five or six carats hanging on a box
 that the shoppers
 can take when they enter the co-op.
Most of the carrots are actually upside down

Once every 6 weeks I have to do workshift at the Park Slope Food Co-op. 

(i actually work once every 3 weeks because you'll never see my wife in there. And to digress... when I went to orientation I asked the orientation leader if it would be okay if I would do every work assignment for my spouse.The orientation leader who was young enough to be my child told me of course it would be okay for me to do all the work for my partner, many members do that. But then she turned and looked at me and told me it would be very important in terms of our relationship that she does something to make up for all this work I am doing. Instead of killing her I told her that my wife goes to work and makes all our money. she told me that was fine and I kept my mouth shut and was allowed to join the co-op ) 

When I joined i took a job with the receiving squad. Our responsibility was basically to get the food from the truck to the shelf. Sometimes we unloaded the truck, sometimes we moved it around in the basement, and sometimes we moved it from the basement to the shelves. I enjoyed it. I enjoyed meeting my neighbors and we actually talked about the fact that they'd be five of us unloading a truck and between the five of us we had eight advanced degrees.We were happy we only had to do it for less than 3 hours and even paused to talk about what it must be like to do it for 40 or 50 or 60 hours a week. Physical labor could be fun for short periods of time.We acknowledged our privilege

Then I got really sick. If you're just reading this blog for the first time when I say really sick I mean intensive care sick. 135 days in the hospital sick. Coming home by wheelchair sick. Not really gotten that much better sick. The food co-op doesn't make people work who can't work and I was given a medical leave for a number of years. But then I got a call from the office telling me they think I'm ready to come back to work. It didn't occur to me that I was but they kind of caught me walking around the street and told me to figure out what I could do.I realized I was fully capable of staffing the exit door.Just checking to make sure that everyone has a receipt.And then Covid happened and they took that job away. Now every three weeks I stay off the entrance desk. 

 Below is the black and white job description

Shift Description

Every Wednesday and Thursday, the wearing of a face mask will be required on the shopping floor from 8:00 a.m. - 8:00 p.m., starting 11/22/23.

Entrance desk workers will:

  • check in working and shopping members
  • use the shopping tag system to maintain limits on shopping floor capacity
  • inform members of their individual and household status
  • read and interpret member information presented on the entrance desk screen

Entrance workers provide an essential member service and must be welcoming, polite, able to read and interpret information on the entrance desk screen, and clearly convey information about member status directly to members.

Entrance workers also provide a key security function, and must remain alert throughout the shift, which may have slow periods, therefore reading, writing, talking on the phone, texting, etc. are not allowed.

Punctuality and good attendance will be essential, as you will be the only entrance desk worker scheduled for the shift.

Coop staff will train you on your first shift, and provide support and answer questions going forward.

 

Shift Requirements

Entrance workers should be punctual, have good attendance and be welcoming and polite to members and guests.

Other requirements are:

  • Communicate clearly information to members entering the Coop
  • Work in a busy environment interacting with many members
  • Pay attention to the flow of members entering the Coop
  • No eating while working at the entrance desk or on the shopping floor
  • Being prepared to work continuously for the duration of the 2.75 hour shift without shopping or taking excessive breaks 
  • Interact cooperatively and respectively with members and staff
  • Report to and follow the instruction given by the Coop’s staff assigned to front end and technical support
What's not really clear in the job description is what the character all about. The co-op has a limited occupancy because of Covid. Everyone who walks in the door takes a laminated piece of paper that's hanging on a little hanger. All the pieces of paper are the same and they all have a picture of a carrot. There is a finite number of carrots. Shoppers hang the carrots on their wagon and when they're done shopping they either bring them back to me at the entrance desk or someone who's helping out on the shopping floor brings them back to me and clumps. When there's no more carrots to be given out We are at capacity and I can't let anyone in.


It wasn't really my plan but I seem to go beyond the job description. People have told me they enjoy shopping when I work at the entrance desk because I treat everybody with joy. I don't just, "Interact cooperatively and respectively with members and staff."

  • welcome to the shopping place
  • choose your carrot
  • take the carrot that is choosing you
  • don't give it so much thought it's a short-term relationship
  • Take the penultimate carrot...  You get the ultimate carrot
  • I love it when we run out of carrots. Does that means the co-op is at capacity and I get to tell people they can't go shopping. My little power trip
  • There are many carrot jokes and puns. And I'm extremely uncomfortable when people choose an upside down carrot. 
  • Some people want a different colored carrot. Now they are all orange because people used to fight over the green ones
  • But when it's not busy I'm so lucky because I get to flirt with the toddlers
  • I also like to remind people to buy everything they wanted to buy. Because they don't want to have to come back. It's a little bit of quick hypnotism. Maybe.

Some of my friends who've interacted with me at the entrance desk Have pointed out how much a perfect fit it is for me.And I realized a few things.First and mainly, I'm a freaking extrovert and sitting in a doorway And greeting people is perfect for me. Also, I've told people that I spent four and a half months in the hospital. Most of that time I was staring at the TV or the walls. I've told people that I was just daydreaming about working at the entrance desk at the coop. (not really). 

But the other day I had a magnificent epiphany.

Recently I've gotten busy as a disability rights activist. I really understand the term reasonable accommodation. I never asked for a reasonable accommodation at the co-op. I was simply told to go figure out which jobs I think I could do. Which I think actually is one of the best workplace reasonable accommodations you can ask for.  My days have unloading trucks and stocking shelves are over. But when I do my shift at the co-op there's no reason I can't simply greet people and press two buttons on a keyboard and let them go shopping. I can read what the computer screen says and I can tell people if they have any issues before they walk in. My disability doesn't matter.

That's it, for 2 hours and 45 minutes i'm doing what I can do. I'm contributing to society. I'm not someone who needs help. I'm doing the helping. Everybody wants to be relevant and useful and for 2 hours and 45 minutes I can be that.

So I'm not just an extrovert who gets to greet people for 2 hours and 45 minutes. I'm a person with a disability who gets to do the job they're capable of doing. Not everybody has to be able to do everything. And while some people can't do anything, most people can do something. 

Wednesday, January 10, 2024

DFL Again

In the first week of this year I finished the dead fucking last in two races. The first one wasn't really a thing. My running club puts on a handicap race on New Year's Day. Everyone estimates they're finished time for a loop of prospect Park and I overestimated my speed.I forgot that I was going to take it easy because 6 days after that race I was going to attempt to run a 50 km race. 

Last month, on December 3rd I registered for my running club's 50 km race. The Prospect Park Endurance fest. The fact that it was paired up with a 50-mi race and had a time limit of 15 hours made it just right from me.I knew that I would have no problem finishing 31 mi in 15 hours.But what I didn't anticipate that day was that it was heavily raining from the start. Within minutes of the race my feet will water logged. That wouldn't have really been a problem if it weren't for the fact that I was wearing ankle foot orthotics and custom made prosthetics holding up my fallen arches. I felt my feet moving around in my shoes and after 13 miles i really worried that either my shoes my orthotics or my feet were going to break. So I walked off the course after running about 14 mi. A DNF is a hard thing to accept, but I didn't want to let that little voice in my head that kept saying "at least you finished" cause an injury.  To add, i wasn't disappointed that I didn't finish. I was disappointed that I didn't meet the second set of guides that we're going to keep me company while I went around Prospect Park.

A couple of weeks after I walked off the course in Prospect Park a friend of mine that also happens to have Guillain-Barre syndrome sent me a message about a 50k in Queens. She told me she was going to try it. How can I not sign up for a 50K where two of the competitors would have GBS. So clickityclick I'm signed up for another 50K. I should have known that a race named the Frozen Flamingo 50k wouldn't have better weather than a race in December.

Well, weather comes in a spectrum. It was not better and it was not worse. There wasn't continual heavy rain. The race started at 7:00 a.m. and for the first few hours there was light rain. Then there was some heavy rain. Then it stopped then there was a little sleet. And then it's snowed a little. The snow didn't stick nor did it cause anything to get slippery. But the rain didn't go away when it hit the ground. They were multiple places on the course where the puddles were unavoidable. And when I say unavoidable I mean to say that you had a choice of three or four inches of water or walk through mud that yanks people's shoes off.Or walk around our entire ball field that was also saturated with water.I actually found a detour to the entire course and spend some time on some sidewalks outside the park.I didn't think walking through the mud was a safe alternative.

Are those of you that do not know me I should tell you that I am an Achilles athlete. That means I'm an athlete with a disability. I could run by myself but it's really not a great idea. If I'm going to walk out of my house I wear ankle foot orthotics that hold up my toes. Otherwise the likelihood of me tripping over my own foot is pretty high. So if I run a race or go out for a long training run I go out with an Achilles guide. They mostly keep me company. Sometimes they're a little overprotective but I can't complain. If I fall, they have to pick me up. But getting a guide for 31 mi race is kind of a challenge. So, I Set up a Google spreadsheet so people can fill in their names for each lap I was running.The course was 15 laps of slightly more than 2 mi each.The plan which I pretty much kept to was to run each lap in 40 minutes.About a dozen people signed up to guide me for one or more laps.Some of my guides were people that I met before and for two of them I was the first athlete they ever guided. I really appreciate it the help and companionship that I got from all the guides that came out. I hope they also had a good time

And I'm really proud of my accomplishment. I recently did some math and it was my 39th Marathon finish. Five of those marathons were distances above 26.2 mi. It was my 10th marathon finish since being diagnosed with GBS. The race director pointed out that my splits were very even. All but one of the 2.06 mi loops we're in about 40 minutes. The one that took 47 minutes was when I changed my clothes. Once my guides told me the weather forecast said the rain was over I, took off my not so waterproof rain jacket, hat and my hoodie. I actually wanted to put the hat and hoodie back on but my guides had to point out to me that they were completely waterlogged. I had no idea. I'm also happy to report that I do not have a cold. It's been 3 days since I ran the race and having wet feet for 11 hours didn't make me sick.

here's a picture during the first half of the race



after I changed my top two layers





to the left is the Facebook post about 20 minutes after finishing, it says...
I just won a 50K race. edited to ad a little clarification. 50 km is 31 mi. It was also a D2D race Dawn to dusk. I started at 7:00 a.m. and I finished just before 5:00 p.m.. there was significant periods of light rain short periods of heavy rain a snow shower and some sleet.
Without my Achilles guides it would have been a terrible experience. Because they were with me it was wonderful.
10 years ago there were some doctors that thought I might die. I didn't just live, I reaffirmrd that I am alive
#GoAchilles #FUGBS 
See less
— at Kessina Park.



To the right is a photo provided by the flamingo kid running company. There's a lot going on there. It's a picture of myself on the right and to the left is Marie. She's responsible for getting me into this. We are both survivors of Guillain-Barre syndrome.We are both holding up the special awards we earned for finishing dead fucking last. They are little turtle key chains. TurtleIs are the mascot of people with GBS. 
Getting Better Slowly.


Friday, December 22, 2023

My kids do cool stuff

Yesterday I left my house before the sun came up. If you've been paying attention to me that's not really unusual. In the summer I do that a lot to avoid running in the heat,or to get to a race that's not around the corner.But it was really unusual to do it with my son. Nicholas is not a morning person.But yesterday we left the house together at 6:30 in the morning.It wasn't only 6:30 in the morning but it was 27°.

Nicholas currently works as a paraprofessional at the high school he went to. He graduated from the Harbor School on Governors Island. When he was there he led a research team that studied how different concretes affect the sea life around the perimeter of Manhattan Island. He was eventually paid for this research by the companies that are going to be rebuilding the seawall around Manhattan Island. Then he graduated college with a degree in the environmental sciences.

Every Wednesday morning he walks about a mile to the perimeter of the Gowanus Canal and takes a sample of water out of it. Yesterday I joined him and I took these pictures as he climbed over the fence and then reach down to get some water out of the canal.The tide was really low so he couldn't reach the water from the floating pier and I was really glad he was wearing a life preserver as he was so close to that Super Fund site. I told him I read that the canal is made out of 90% guns and 10% dead bodies. He told me that there's a little water there and he's going to get a sample of it.

I really don't understand what they're doing with the water, but I do know a few things. I know that you can do whatever you want when you wear a reflective vest. And if it will keep you floating i can do whatever you want twice. I know that Nicholas's workmates told him he was crazy for doing this once a week.But I also know he's into science and into going to graduate school. I also know from 23 years of experience that my son is not a morning person. Yeah he told me he was going to be walking out of the house at 6:30 a.m. and we walked out of the house at 6:30 a.m.

And then there's my daughter who also has a cool job. While it's adjacent to the water it really has nothing to do with the water. They operate the carousel underneath the Brooklyn Bridge.Sometimes I think the coolest thing that happens to me is that when my daughter comes to visit I get to have the key to the carousel in my house. And if you're interested Sabrina can cut and color your hair

Friday, November 24, 2023

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.

Thursday, October 26, 2023

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.

Sunday, October 22, 2023

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



This is not me

This is not me
Not me.

Blog Archive