This is why we can't have nice things

 685 1st Ave

We are not allowed to post on social media

 I have been a poll worker for about 7 years and working early voting for the last four of them. I started working early voting during the presidential primary in 2020. Back then people came to vote and Hazmat suits. Since then every election has really been a practice election for the presidential election of 2024.We actually had to do many of the things that we only read about in our manual. I worked the first 5 days of early voting at Brooklyn Borough Hall. About 95% of the time every table had a voter. Sometimes the line was an hour long but usually it was less than 5 minutes.At the end of each day a lot of the pull workers congratulated ourselves on how hard we worked and what a good job we did. Because we did.

We are not allowed to have beverages on the tables we work at. Even before the polls open and our computers are not on the tables. The polls opened at 8:00 a.m. and we were supposed to show up at 7:00 a.m. On the second day of early voting I showed up at 6:30 in the morning so I can have a cup of coffee before everything got started. As I was entering the Starbucks diagonally cross street from Borough Hall I noticed a very elderly woman with a walker talking to a police officer. In her hands was all the paperwork that you get in the mail to tell you about the election. Before I went into my get my coffee I asked her if she was here to vote. She said yes but she wasn't sure what time the polls opened or where to go. I looked at her paperwork and told her that I was a poll worker and that she's supposed to vote across the street but the polls don't open for 90 more minutes. She said She thought they opened at 6:00 a.m.. I said no that's unreal election day but if you wait for me to get my coffee I'll walk you to the door where you enter into. The cop made eye contact with me and thank me.

While for us to walk around the building and the building security had just unlocked the door. On the way there she apologized for her physical condition She told me she wasn't always like this She used to own a business and go skiing. She used to have friends. I told her that's all fine and today you're going to get to vote 

I used my Brooklyn voice to inform the Borough Hall police officers that this was the first voter to come in when the polls open at 8:00 a.m. and that she needed to sit inside on a chair. They heard me. When I went upstairs I told the line management crew that the first voter was already sitting inside. I thought that was the end of it.

At 7:59 a.m. my coordinator came running over to me and told me that the lady I had walked into the building would not come up the stairs without me.I jumped up and escorted her right up to my table so I could issue with her a ballot. I did that and walked her over to the accessible privacy booth so she can sit down and take her time with the ballot. Then I let the inspectors at the scanning machines know that she might need some help getting over to the machines. I told her that the men standing next to her would help her when it was time for her to actually cast her ballot. She looked right at me then and said "Thank you and I love you."

i'm told everyone in New York City who work the election in 2024 got this thing mailed to them. I happen to know why I got mine. 

Words matter

 

A few lifetimes ago I was a school administrator at a private for-profit job training program. I was the dean of students at a 600-hour training program that taught people how to record music.  I was also the first and only employee there that didn't have a background in the industry or in business. I had an MSW. One of the problems that I observed was that teachers were often scheduled to be in two classes at once. The teacher would announce to the class that they won't be teaching the next class a substitute would teach the class. So of course a lot of students just cut the class. But in reality it was a plan.Teachers double booked on a certain day when a different teacher was available who was actually better at teaching that subject than the original teacher. I suggested we stop using the word substitute teacher and replace it with specialist.

Attendance dramatically improved on these days. My boss was happy and she actually looked at me and told me that that's why she hired me. She needed someone that thought differently from the musicians and recording engineers and business people that worked there. I told her it was a no-brainer and she again reminded me that I was the only person with a sociology background in the building. Through my training and education I understood that what you call things matters. Words matter...

So now I have a Google search setup. A news alert to tell me if Guillain Barre Syndrome and New York City ever come up in the same news article. I really did it so that i might receive news of someone else getting this rare disease that is in my town. Once it said me a link to a obituary and I really wish I knew this person before he died. It is often irrelevant content. GBS could be mentioned in an article and there could be an ad for another article that contains the word New York. Like this article I looked at this morning. The article is only remotely about New York City contains the words Guillain Barre Syndrome in the signature box about the author. I remember hearing about Carl Goldman back at the beginning of Covid. He got Covid on a cruise and was one of the first Americans to have recover. He met with President Trump and was an example of how Covid wasn't a big deal. Much earlier in his life he had also had GBS.

ABOUT CARL GOLDMAN

Carl Goldman, along with his wife, Jeri repurchased KHTS AM-1220, Santa Clarita’s hometown station on October 24, 2003. They owned it from 1990-1998, and then sold it to Clear Channel Communication in 1998, buying it back from Clear Channel in 2003. Since then, they have rebuilt KHTS as a critical voice of the Valley. In 2015 the radio station moved to its new headquarters on Main Street in Old Town Newhall, in the original Newhall Hardware building. In 2018 an FM was added, 98.1, with its signal being simulcast with AM-1220. In January 2020, Carl and Jeri cruised on the Diamond Princess. Carl was one of the first Americans to come down with Covid-19. Months earlier he was impacted by Guillain Barre Syndrome as a result of a Shingles vaccine in September 2019. He is still in recovery from the vaccine.

Okay, according to the FDA up to six people per million might come down with GBS within 6 weeks of having the shingles vaccine. Six people per million above the background number of 10 to 20 per million people who are getting it anyway . In other words 10 to 20 people per million are getting GBS every year and 16 to 26 people per million are getting it within 6 weeks of the Shingles shot. Would have gotten GBS the same way I did or from some random reason rather than the recent triangle shot he had but we'll never know.  (And by the way I just got my first shingle shot last month. Both my neurologist and my GP told me that shingles could also trigger GBS and shingles really sucks)

But in his lights It says,"Months earlier he was impacted by Guillain Barre Syndrome as a result of a Shingles vaccine in September 2019. He is still in recovery from the vaccine."....  

"He is still in recovery from the vaccine"

I wonder why he chose those words? I would never say that I'm still recovering from food poisoning which is the most likely trigger of my GBS. I wonder how many people got shingles because He and others liked him said that this vaccine gave him GBS and he still recovering from the vaccine. Vaccine hesitancy is on the rise all over the world and people are starting to die from polio again . Words matter

10 years ago I couldn't walk without assistance. People said that I was wheelchair-bound. I thought that was weird. I wasn't tied to the wheelchair. In fact like many wheelchair users I was able to get up and walk a few steps almost the entire time I had a wheelchair.One of my friends said to me that she was never bound to her wheelchair except in the privacy of her bedroom with her spouse. That was funny. And when I said that it made people uncomfortable and then I looked at them and I said it's a tool not a prison. There are people out there who are hesitant about using a wheelchair because they'd be embarrassed because of phrases like wheelchair bound. I'm not eyeglassbound I just put them on as soon as I wake up in the morning.

.... so I was thinking. Instead of saying doing the dishes or doing the laundry, maybe we should say recycling the dishes or recycling the clothes. Think about it.

 

Apparently I am inspirational

I never signed up to be inspirational. It's not my job. It's too much pressure. But if people tell me I'm inspiring them I accept it because there's only two people I want to expire and those are my kids so if strangers and acquaintances tell me that inspirational I accept it as a compliment.

it all started with NYRR featuring me here. that triggered  this on News 12. 

That said the GBS Foundation asked me if it was okay if they referred me to a reporter from the New York Post.The reporter was very nice to me as was the photographer who I met separately. I was hesitant to talk to anyone from the post because they are a rag that made me look like a dirtbag 11 years ago. But here's the story as published in Microsoft News so you don't have to click on a Rupert Murdoch link.

then it seems someone at news radio 1010 wins read the post story about me and wanted to put me on the radio. That was pretty exciting because I was very busy this week as an inspector at  early voting location in Brooklyn Borough Hall.  i'm told that my pol site was featured in this news article but I was too busy to even know that the camera crew was in the room with me.  also there was a little piece of me that thought I was going to be live on the radio. I had a scheduled 3:30 phone call with the reporter and I felt pretty cool asking my boss to make sure I can have my lunch break at that time because I needed to be interviewed for the radio. But we spoke to for 15 minutes and it was recorded and it boiled down to this news story

I never heard of Wide Open Country, but apparently they have a writer who moved some of the words around in the post article and created this about me

and WNBC news gave me a call and showed up at the Achilles workout on Thursday evening and made this little clip.

or

And hey I just remembered before the Brooklyn half marathon news 12 featured me in this

Took some pictures on my run today

 Today was the disability pride parade that it was also two weeks before the New York City marathon. So I had to do two things. I had to march in the parade that started at 11:00 a.m. but I also had to get in some miles. So I left my house at 6:00 in the morning and ran to Madison Square Park.

It was still dark when I left my house. But by the time I got to The Manhattan Bridge the sun had risen. When I was about 2/3 of the way over the bridge I noticed a stripe across all of the buildings in the Alfred E Smith houses.  It took me a moment to realize the shadow of the bridge that I was on was being cast on buildings between half a mile and a mile away. To the left are two different views of this celestial event. 

It reminded me that about 20 years ago i woke up before Dawn to run to the start of a race in Central Park. I ran over the Brooklyn Bridge and noticed many many people sitting on the same side of the bridge looking north.Some look like they just woke up and some looked like they had been there all night. I stopped and asked them what they were looking at and they pointed at The Manhattan Bridge.the sun was low and shining on us. but I'm Manhattan bound train went over the Manhattan Bridge and it cast a shadow on us over on the Brooklyn Bridge. Everybody uploaded. I didn't stop and take a picture 

i also stopped to stop one more picture that's become kind of an iconic scene from the Manhattan Bridge. Apparently people keep cutting a hole in the fence so you get a great view of the world trade center. I didn't stop and take a picture in 1999 when I realized it was a great view of the Twin Towers so I stopped and took it today.

I continued my run up the west side of Manhattan. It was about 8:00 a.m. and I was approaching West 14th Street and to my left was Little Island. You can look at the Google for a lot of great pictures but when I got to the top I did take one picture because it might be 25 years before I go back.

10 years ago, yesterday

On May 7th 2014 I walked into my doctor's office and she told me to rush to the hospital because I had Guillain-Barre syndrome. She made a point of telling me to go to Mount Sinai Beth Israel Hospital in Manhattan because the hospital around the corner from my house would have killed me. She actually said that and I've learned that that might have been true. In the emergency room they confirm my diagnosis and told me I be fine in a year. I joked and told him I had to be home and move my car on Friday because they wanted to clean the street. In my mind I joked to myself that I was never fine so I would be looking forward to getting fine. But they were wrong. A year went by and I wasn't fine. It's been 10 years and I'm not fine.But yesterday I read traced my steps from all the hospitals I went to 10 years ago.10 years ago they moved me around in an ambulance, yesterday I ran them.

I walked in the door of the emergency room at Mount Sinai Beth Israel Hospital on 2nd Avenue and 17th Street. My doctor had called ahead and they were expecting me so I didn't stay in the emergency room for more than 5 minutes and was put on a Gurnee and left in front of the nursing station. They started running a billion tests and I actually asked one of the doctors if I was being admitted because I really didn't understand what was going on.He looked at me quickly and said yes we're just trying to figure out where we're going to do the spinal tap.Here, or upstairs and intensive care.For most of the rest of the 135 days I was hospital the doctor has had some great bedside manner. That was a moment where it didn't happen.Hearing the words intensive care and spinal tap in one sentence is not really what people want to hear. They did the spinal tap downstairs and then rolled me up to the Step down suite where I received IVIG for 5 days and then moved into a regular room for a few days. 

The higher light of my stay in intensive care was watching a guy best to have a camera removed from his poop. I'd repeat the story but I already told it in this blog post 

They determined that the IVIG was working and that I stopped getting worse so I can move to rehab. The buildings were physically connected by a bridge but they put me in an ambulance.

The building next door was rusk rehab. I was leaving the Mount Sinai / Northwell Health System i'm moving into the NYU Langone Health System. I have since learned that these are big deals. I wouldn't say that I didn't have great doctors at Mount Sinai but I learned what great doctors were about when I got to Rusk.Simply put they understood that happy patients heal better. A big part of their job was to keep me happy. They took care of the big things and the little things. Little things like having good food that was served with a smile. Big things like paying attention to my progress and respecting my opinion. 

One morning when I was there my favorite nurse came into my room after my breakfast was served. She sat at the edge of my bed and picked up the menu and started circling stuff. I told her that I think the nutritionist already indicated what I wanted to get for food the next day. She told me that she was circling stuff for herself She wanted to start having breakfast with me and this was a way of getting free food.I realized that I had arrived at the best place with the best people and I became the best patient.I was in pretty shitty situation but I had arrived at the status of making the best of it. A few years later when I was still using crutches I walked right back into that hospital and went up to the fifth floor where at Ludmilla was working. She happened to be sitting right at the front desk and without looking up at me she asked me who I was there to see. I just had a one word answer. "You." She jumped up and hugged me. We were both crying like babies and I started laughing. She asked me what was so funny. I told her that I didn't know she was short.She worked with me for weeks but I had never stood up in her presence before.

. 

But there was a problem. It wasn't that I wasn't getting better It was that I was getting worse. so the decision was made that I needed to go back to a regular hospital.

Another ambulance ride to NYU Langone Hospital. There they thought my diagnosis should change from GBS to CIDP. The difference is big. GBS is an acute condition. Your immune system attacks the sheaths your motor nerves over a relatively short period of time.a few weeks. Chronic inflammatory demolition polynoropathy is when your immune system attacks the sheets of your motor nerves forever. At first they were going to give me another round of IVIG but then they realized they needed to do what they called the more aggressive treatment. They put a central line in my carotid artery and filtered my blood for an entire day over the course of 5 days. Then they gave me five more rounds of IVIG. As soon as that ended they sent me back to Rusk.After a few weeks at Rusk the doctors and I realized that was a problem. I was still getting worse.... Back to Langone.

This time they didn't do anything for a couple of days. But every doctor in the hospital seem to come in and visit me. When a familiar doctor came into my room I asked her if there was a big room on the top floor of the building where they all sat around a big table and talked about me. Yep, pretty much that.I asked her if I'd be better off at Columbia University Hospital because I found out that was the center of excellence for people with Guillain-Barre syndrome.She told me the guy from Columbia was also in that room.So was a guy from London Paris and Tokyo.I was a puzzle that a lot of really smart doctors with trying to figure out how to solve.They presented my wife and I with their research results. They explained it in a way that made sense to both of us. My wife understood the math and I understood the reality of paralysis.buff label non-fda approved chemotherapy. They needed to reboot my immune system. This wasn't even a drug trial they were trying on meI was patient number 14.

Either the chemo worked or the disease had run its course but I stopped getting worse. But the bad news was that my diagnosis was changed. It wasn't GBS or CIDP anymore. I was officially diagnosed with acute motor axonal neuropathy. My immune system was attacking my motor nerves and not just the covers of the nerve sheaths. The mantra of the doctors changed from you'll be fine in a year to let's talk in 3 years.The other part of the bad news is that I could not return to Rusk. I wasn't going to be healing fast enough to meet their standards. I had to go to what the hospital social worker called subsequent care. But, what I later learned was called a nursing home.My wife had 36 hours to make a decision on where I should stay. The scary thing was that the length of time I was going to be in that nursing home was at that point considered unknown.And the even scary thing is that after my wife visited five different nursing homes she came in and treated me like an adult. She told me she only had bad news. I was going to hate it there. She's always correct. We chose the nursing home that had physical therapist that were trained by the same people who trained mine in the hospital. They will all associated with NYU Langone/Rusk.

There are three pictures here. The cell on top shows a picture of the front door of Gouverneur. In the middle shows the side of the building and a tree. That's what the tree looked like on the day I went home. Leaves are starting to fall and there's a little bit of yellow in the leaves. I remember looking out that tree out my window all the time. I remember that I walked out of my house on May 7th and it was now getting to be the middle of September and I still wasn't home.I hated the fact that the tree was changing. I had missed the entirety of the summer. 

Governor was a shit hole. So many people on the staff were looking at it as their second job and was sleeping through their shifts. I needed help to go to the bathroom and I remember once pressing the call button i'm waiting through two episodes of Law and Order and no one came.So I fumbled around for my phone and called the main number for the nursing home.Then I asked for the nurses station on the 5th floor and all the head nurse on my floor that it was Michael Ring in room 515 and that I really had to pee. A nurse's aide came running in minutes later asking me why I had to call the hospital for help.I told them I rang the bell 2 hours ago and was waiting here and that they couldn't even hear me call.She denied that. I didn't really care what she said It was the culture of that place to treat patients like shit.If you Google Governor and Covid you'll find out it was kind of the center of death during the pandemic.I've lost sleep imagining what it would have been like if I would have had GBS during covered.

There's also a picture of a park bench out there. Directly across the street from Gouverneur was it playground attached to the LaGuardia houses. During the months that I was in Gouverneur I was often given a pass to go outside. It was kind of hard to be pushed around the neighborhood so going outside mostly meant going across the street where my kids or my family and my visitors would sit on the benches. I was using a wheelchair and was unable to transfer myself onto those benches. I remember looking at that bench and wishing I can sit on it.All I wanted to do was sit on a real chair and stretch my back.When I finished my run yesterday I sat right there and cracked my back.

Leaving Governor wasn't easy. After the first week being there because of the incompetence of the social workers they were going to transfer me to a place where I was going to get palliative care. Someone checked a box that I was never going to get better and I didn't need to be in a nursing home that had physical therapy.After that I had to appeal my termination of care every 3 to 5 days.I hated it there. Anyone would. Physical and occupational therapy was pretty good, but other than that the place was a nightmare. Besides having to beg to go to the bathroom the food was commonly terrible.I was mixed up with people who had dementia and who were clearly never going home.But the culture there was that everyone had dementia and no one was going home and we weren't worthy of respect.Once I realized it only took me one person to transfer me to a bed from a wheelchair I told him I was ready to go home and they were shocked They thought I wanted to stay there forever.

Anyway, it's been 10 years and I'm not fine. But then again I don't think I was ever fine. I've had more than a handful of surgeries but I haven't had any relapses. I run at literally half the speed that I used to run. But I run. i hate saying expressions like " the new normal" or " it is what it is" fuck that shit.I love, literary love the people like met only because I've become disabled. But don't get me wrong. I would chop off any given limit to make the other three work perfectly again, and to have never gone through this shit. Fuck you GBS

Below is a picture of the run I did yesterday  

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. 

Update for August 20th 2024

the rules keep changing at the co-op and they change every day. This morning I worked on a Tuesday. It turns out Tuesday is the golden day from Friday to Monday people need to get a carrot on Wednesday and Thursday people have to wear a mask. Tuesday Wednesday and Thursday people may bring guests.So Tuesday is the day you can bring a guests and don't need a carrot and don't eat a mask.Some people would confused with the lack of "no". shopping commando and the opportunity to bring in a guestWas just too much freedom for some people.So to make them feel better I reminded them that they needed to wear their shoes and shirt while they shopped.

Some signs

 In the past month I managed to take some random pictures of some weird signs. Here they are in no particular order.

Last week I spent 3 days in St Louis. If you want to see really nice pictures of The Arch or Bush Stadium google will show you some really great ones. Instead here's a picture I took with the airport

in a quiet hallway in the airport there was this little booth set up ready to have someone participate in their first amendment rights. It looks like St Louis Airport was afraid people would overreact to First Amendment so they put everyone in a little box and warn people that someone might speak to them.

The sign reads

 "NOTICE.. 

The airport authority advises that you may be approached by person seeking money donations or petition signatures or distributing literature. 

The courts uphold such activities based on the constitutional right to freedom of speech. 

The airport authority in no way endorses these activities."

also, and equally disturbing every restroom in the airport also has a sign saying that it was a Tornado shelter.  I was in St Louis for a GBS thing. I was interviewed by a drug company and I got to go to a regional conference. But I did get there a day early and I went for a run and I took some horrible pictures of the arch and of the Mississippi River. Again if you're looking for interesting photographs go to Google. But I will point out that it was very weird to be running around St Louis at 9:30 on a Friday morning and not seeing anyone at all walking around. There were office buildings that seem to be completely unused, Or maybe they just had an underground parking lot. There are four bridges that crossed the Mississippi and I ran over the only one that had a pedestrian path. I only encountered two other people. Someone else who was running back and forth and someone who was sleeping on the bridge. 

St Louis with so shut down that at 9:00 a.m. on a Friday morning the only street food vendor that was
there wasn't even open yet but I wasn't sure I was ready for a hamburger a hot dog and egg roll or crab rangoon. I'll have to find out if Crab Rangoon is a specialty of St Louis or something the family that owns the hot dog stand was really into. i just need to add before I publish this that I ordered grab rangoon from my local Chinese restaurant. It was a fried dumpling filled with cheese, without a hint of seafood flavor.

You can click through on the Strava map for some more pictures of St Louis

Anyway back in Brooklyn. Last week I was taking the bus down to the gym and actually missed my stop so I had to walk back a couple of blocks. These two signs were in front of the same house on 7th Avenue around 16th or 17th Street. Really makes me wonder what's going on with their neighbors.   It reminded me that last fall my mother-in-law's cat died. I'm going to share this but if you're reading this keep in mind that I'm an asshole...  Well traveling across Brooklyn all I was thinking about was that this is going to cost me $1,000 because we're going to have to bring the thing to a vet to get cremated and I was looking for alternatives. So I Googled what to do with a dead cat in New York City "In New York City, residents can dispose of deceased pets by placing them in a heavy-duty black bag, labeling it, and putting it out with regular trash on collection day."It was Halloween Eve. All I was thinking about would be what would happen if there was a bag labeled dead cat sitting on a Street in Sheepshead Bay on Halloween. I wanted to park myself on the porch with my camera. Instead we just didn't label the bag. I grew up on that street looking back 40 or 50 years I can't imagine what I would have done if I would have seen a bag on the curb labeled dead cat on Halloween. It would have been horrific.

All right now assign that was significantly less disturbing. Last week I went for a run from my

physical therapy office on 38th Street and 1st Avenue with the intention of running all the way uptown to the Bronx. The path along the East River is still significantly busted up so I had to run up York Avenue for a bit. As I was running on the sidewalk I remembered that I saw a blog about how Avenue A used to continue all the way up to uptown Manhattan. Just when I decided I should look around for the evidence It was right in front of me. On the corner of East 77th Street and York Avenue there's a public school. Without hiring a drone I couldn't take a picture of both the sign that said York Avenue and the etching on the side of the school that said Avenue A.

One more sign. A couple of weeks ago I went to a Met game and after a friend and I decided to get on the seven train and head over to Main Street to find some great dinner. On our way to a great dinner we kind of meandered around and I saw this wall that looked like a great place to pee. For obvious reasons I will not tell you exactly where it was. But it's a good thing this sign was there otherwise I would have peed

and last but not least spray  painted on the side of a wall of a Kentucky Fried Chicken on 2nd Avenue and 14th Street.....   "This is not actually food."   i remember that a bunch of years ago they rebranded themselves and changed their name to KFC. They thought that removing the word fried from there brand would increase sales. They put it back because it turned out the people who buy that shit don't care. it was not there back in May when Google took the pictures

I need to add one more photo I took upon landing at O'Hare Airport in Chicago. I truly believe an entire comedy routine could be based upon this picture. Let me rephrase that. Not one comedy routine.  If I were teaching a class in comedy i would send this picture to all my students before the first day of class and ask them all to have a 5 minute skit prepared based on this photograph.Maybe a combination of this photograph and the free speech booth that I saw in St Louis

Happy Disability Pride Mouth

This morning was the kickoff celebration for disability pride month at

Manhattan
Borough Hall

Brooklyn Borough Hall. I was asked to speak. Strike that, I was honored to be asked to speak. Apartments in all sorts of other things I've given testimony and I just stand up and start talking. Today actually put some notes together. Below are my notes I think I stuck to them.

just updating this post with a picture of me spontaneously being asked to speak at Manhattan Borough Hall

Brooklyn
Borough Hall

I wasn't always like this. Anyone can say that at any time but I had a significant change in my life 10 years ago. 10 years ago, everything changed.

10 years 2 months and 3 days agoI walked into the hospital. When I walked in I had no name for prideI was an upper middle class straight white guy.Let me rephrase that I was an upper middle class straight not yet disabled white guy. 

Until then I always thought pride was for other peopleI didn't need it because I had all my privilege I just thought of myself as an ally and didn't even know what that meant

I stumbled into the hospital because I was developing weakness in my arms and legsI was diagnosed with Guillain-Barre syndrome and Didn't come home  for 135 days. I came home because I was able to transfer myself with the help of only one person They said I'd be fine in a year. They were wrong Because they Meant that I'd be physically fine in a year. Yeah, they were right. I'm fine

I don't think I really started thinking about disability pride until a couple of years agoI just started doing the things I used to do as an able-bodied person. But then I realized I wasn't an able body person anymore and i  wasn't sick. I was a person with a disabilityI had to embrace that and move on with my life.I couldn't be ashamed of myself.I wasn't thinking about pride specifically. But I was thinking about the opposite. Shame. I wasn't going to have any of that

 And then two things happened. 

I saw the movie Crip Camp And went to other films at the real abilities festival. And read Nadina's book and Judy's book and Dick Traum’s book

I also broke through the barrier of complaining about how I was treated as a person with a disability to becoming an advocate for people with disabilities.  And I started hanging out with people like Jean and Kathy and Joe And Chris and Q.

The words disability and shame had nothing to do with each other.When I leave my house I have to wear ankle foot orthotics.  Otherwise I'll turn my ankle and trip over my own feet.

Some people wear them under their pants. That's their prerogative. I choose them to wear on the outsideI and put blinky stickers on them.I'm not ashamed of them.They help me walk just like my eyeglasses help me see and just like someone's car helps them get from one place to another. Nothing to be ashamed of… People that have shame don't get together with each otherThey live isolated lives.Unproductive unhappy lives. Eventually they might make it to the Texas state house. But I'm so happy I live in Brooklyn so I can make this speech in Brooklyn Borough Hall. With pride.

… 

Think Globally, Act Locally

After watching last night's debate i'm so disgusted with politics i feel like I'm the grass under the feet of Some dragons having a fight on TV.  So I'm going to go back to one of the phrases I learned back in college.

Think globally, act locally

Last week and for a week back in the Spring i worked early voting and then was coordinator at my local polling place an election day. We really considered this a practice election for the general election come November so we were going through the motions... Doing everything right and making sure we did everything by the book. But just because we have to do everything by the book doesn't mean we can't make voters feel joyous.  There was some moments of joyity.

There Isn't much on the ballot in the June primary. So much not on the ballot that some people showed up to vote and didn't have a contest. It turned out that the polling place where I was assigned to work early voting had a geographic location so that half the people who lived in that district where they could vote there didn't actually have any candidates to vote for. The polling place was at one end of the district. So if you lived east of where I was working you voted in the primary for both state assembly and United States Congress. But, if you lived west of where I was working you didn't have anyone on the ballot at all. So if I typed out your name it would come up and say no contest. To make it even more confusing they're had recently been redistricting. So the candidate who was running for re-election for Congress who was flush with funds sent mail to everyone who who could have voted for him before they were redistricted out of his district. (I just really read that and it does sound confusing. But basically, they were plenty of people who walked in and by no fault of their own had no one to vote for.)

So on the second day of early voting a whole family showed up to vote. Two parents, with their 5ish-year-old and 8ish-year-old. But it turned out they didn't have anyone to vote for and the five-year-old started crying because she wanted a future voter sticker. I jumped up and got her a sticker. "Of course you are a future voter and entitled to a sticker Just because your parents aren't voting today doesn't mean you're not a future voter..." i gave the sticker to her older sister as well and then turn to their parents...." you both also get future voter stickers Just because you have no primary election today doesn't mean you don't get to come back here in November and vote."

The next day a husband and wife came into vote. The wife walked up to the table to my right and the husband walked up to my table. She was handed a ballot. But, when I typed in the husband's name my screen told me he didn't have a contest. I had to inform him that because he was a registered Republican he couldn't work in the Democratic primary...There would be Republicans on the ballot in November but none of them were running in a primary against each other. His wife turned to him and snapped "I told you so!" I then reached into my pile of stickers and gave him a future voter sticker. Then, before we can tell her photography was not allowed in the polling place she snapped a picture of him wearing the sticker. I'm sure she instantly put it up on her family Facebook page.

After that the Coordinator commented to me that I walked right up to the line of inappropriateness as a election day worker. I told him I don't walk up to the line, I danced up to the line. And he told me that's why he likes it that I'm sitting next to him It makes the day go better.

But seriously, I'm proud to say I do more than just help voters on election day. I'm a member of the accessible voting advisory committee and meet with the Board of Elections on a regular basis representing the needs of people with disabilities in the city of New York. Change and improvements come in incremental ways and while I was working at the election site I was able to see something that I helped make happen.

Because of my work on the committee I was able to create a new sign to be hung in every polling place and hopefully it'll actually be in the doorway of every polling place come next year. In the lower right hand corner of the sign it indicates a circle with a red line through it indicating that pets are not permitted in the polling place. It kind of shows a symbol that says no dogs cats or rabbits. And in the bottom of the sign it shows someone holding a cane and a dog on a rigid leash, kind of indicating that service animals are allowed

in past years the sign just showed an x through a picture of a person holding a dog and it wasn't really clear that people can bring in service animals this is the old sign.

I don't expect this change in the sign to keep everyone from bringing their pet into the polling place. But some people might not bring in their pet after seeing the sign. And if and when the sun gets placed in the doorway the people working at the entrance could point at it and remind people they can't bring their pets into the polling place. Change comes slowly, and I've learned not to let perfection get in the way of better.

Anyway, well being a poll worker I get to go into the local high school and the grade school that my kids went to and I snapped these pictures to remind myself that the next generation of New Yorkers is getting better. Below, is a sampling of the posters hanging on the wall in the high school and in the grade school. Positive messages that do not include the Ten Commandments. I'm confident that young children today are going to grow up slightly better then the young children of the 60s and 70s when I went to school.