Greetings, internet! A while back, I wrote about Access-A-Ride (AAR). I complained about it, but only because it is virtually the only inter-borough travel option I have as a wheelchair user in NYC, and it is not very good. It is unreliable, disorganized, and very likely understaffed and overscheduled. Since that post, it has gotten worse with regard to getting from point A to point B (the people I speak with on the phone to book pickups, however, continue to be friendly). For instance, it should take, on a good traffic day, anywhere from 35-40 minutes to drive from my sister’s neighborhood in Manhattan to my parents’ neighborhood in Brooklyn. My past two experiences going from my sister’s apartment to my parents’ house have not gone well.

Strike One: The Grand Tour of Brooklyn

In the past (I’m talking at least 2-3 years ago), I would call AAR to book a pickup and tell them that I wanted an appointment time of 12:30pm for my parents’ house from my sister’s apartment (meaning that I wanted to be at my parents’ place by 12:30pm). Whoever was on the phone at AAR would give me a pickup time around 11am, and, because this pickup was on a Sunday, I’d typically get back to my parents’ house by 11:45am. I had no problem with getting to my parents’ house earlier than expected, because it meant I could maybe squeeze in an FES cycle workout, or maybe get some reading done.

I’m not sure what happened in the past two or three years, because I recently called to book a pickup on a Sunday from my sister’s place to my parents’ house, as I usually do after I’ve crashed at my sister’s apartment after a night of tequila and karaoke. The call went about this way:

AAR Operator: Pickup or appointment time?
Me: Appointment, please.
AAR: What time?
Me: 12:30pm, please.
AAR: <Pause> Your pickup time is 10:15am.
Me: 10:15?! Um. Okay, sure. [Because seriously, at this point, what are my other options?]

At first I thought that, as with pickups in the past, they were overestimating the travel time. Meaning, maybe I would get to my parents’ house around 11am.

Silly me.

I got on the AAR vehicle around 10:15am, just as they said. Once my chair was strapped onto the vehicle and an oversized seatbelt was wrapped around me, I took out my headphones and iPod. AAR vehicles are essentially mini buses with a lift. When they drive, the wheelchair lift (which is folded onto the side of the vehicle) rattles rather loudly. The suspension on the vehicles is pretty, to use what the kids are saying these days, “meh.” Going on an AAR vehicle means you have to prepare yourself for a loud and bumpy ride. Music helps.

There were no other pickups in Manhattan, and so we crossed the Manhattan Bridge into Brooklyn. I thought that even if another pickup was scheduled before I got dropped off – and I saw from the driver’s monitor that there was indeed another pickup – that would be fine. After all, they wouldn’t schedule a pickup that was so far away from my drop off point, right?

Gosh, my optimism was adorable.

The pickup, if I recall correctly, was in Clinton Hill (neighborhood northeast of my parents’ neighborhood, but close enough to the Manhattan Bridge that this didn’t seem like an unreasonable pickup). The driver waited outside the given address, where there was an apartment complex, for about five minutes. Now, we, the AAR users, are told that we have five minutes before the driver takes off without us. The driver called their dispatcher to call the person who was going to get picked up to say that they were outside. Moments later, the driver was told that they misunderstood the pickup address. They would have to enter through the parking lot of the apartment complex to pick up that person.

The driver turned the vehicle into the tiny parking lot. They drove up to a door underneath an awning, and then tried to back up and turn around so that the door of the vehicle would face the door under the awning. A nurse came up to the AAR, confirmed that it was the correct one, and then helped an elderly woman board.

I thought we were going to leave the parking lot, but then at that moment, a van pulled into the parking lot and stopped behind the AAR vehicle. I forget whether the van was there to drop people off or pick them up. All I remember was the AAR driver and the van driver getting into a shouting match. I changed my music selection to something with more drums and guitar solos.

We eventually escaped the parking lot and then went on what I call “The Grand Tour of Brooklyn.” This is a bit of an exaggeration, because we didn’t go to every single neighborhood in Brooklyn. But we went through enough.   We went through Bedford-Stuyvesant (east of Clinton Hill), to Brownsville (more east, but now heading south), to Canarsie (more east and south), and a few other neighborhoods that I cannot say with any certainty, but we passed subway stations for the C/2/3 lines, which is way more east than where my parents live.

At some point during this tour, the driver stopped in front of a medical center to drop off the elderly woman. Once she got off the AAR vehicle, I could feel my bladder prodding me. I had to pee. I hadn’t consumed any caffeinated beverages that morning, but all the AAR vehicle’s jostling definitely agitated my bladder.

For those of you who are thinking, “Oh wow, that’s inconvenient,” you haven’t read about my bladder issues. I know that pop culture tends to focus on the legs of people with paralysis, because able-bodied people seem to fear wheelchairs like the plague, but paralysis can affect your bladder. It can prevent an individual from feeling when their bladder is full, and even when their bladder decides to empty itself without warning. My bladder and I have had a long journey, and in that time I’ve regained the ability to know when my bladder is full, and I can feel my urethra well enough to know where to stick the catheter (if this is TMI for you, then you’ve come to the wrong blog).

That said, I can’t hold my bladder for very long. I didn’t know how long it would take to get back to my parents’ house, so I hunched forward and hugged my knees together. I looked out the window and grimaced every time we hit a bump (which, if you’ve ever driven around Brooklyn, happens often). I could feel a cold sweat starting on the back of my neck, which meant one thing – autonomic dysreflexia (AD)! You know, that thing that could be life-threatening. AD typically shows up for me when I really have to pee, but can’t drain my bladder.

After about thirty minutes, I started to recognize streets and avenues, and then buildings, and felt a bit of relief that I would be home soon, and would be able to deal with the AD. The driver, then, started to feel confident and not rely on the GPS on their monitor. This was a mistake, because there is a part of my neighborhood where, if you don’t follow what the GPS tells you, you have to go several blocks in a different direction.

Guess where we went. Come on. Go for it.

I arrived home at 12:30pm. Just when my scheduled appointment time was, so, I can’t complain about that. I got off the AAR after having been on there for a little over two hours. Once I got into the house, I could catheterize myself and drain my bladder. Technically, I had held my bladder from the medical center to my parents’ house, but the holding caused a mess of AD symptoms, which all vanished once my bladder was emptied. If you’re thinking, “But Val, you could’ve avoided those AD symptoms if you had just not hunched over and let yourself pee your pants,” then what the heck? Seriously? That’s what you’re thinking? No one should have to decide between AD and pissing their pants (which, I might add, could lead to a UTI).

Strike Two: We’re Here to Pick You Up After We Said We Couldn’t

I wish I had a snappier title for Strike Two, but I can’t think of a shorter phrase to describe what happens when you book an AAR pickup, only to have a phone call the next day from AAR that says something to the effect of, “I’m sorry, but that pickup you scheduled is no longer valid because of the Disability Pride Parade tomorrow.”

Leave it to the Disability Pride Parade to prevent me from using paratransit. Like rain on my wedding day, people.

But Val, how did you not know this was going to happen? Don’t disabled people know everything about disability happening in NYC all the time and forever?

Well:

1. I belong to zero groups that are participating in the parade.
2. The last time I saw the Disability Pride Parade two years ago, it was entirely by accident, because they were setting up within blocks of my sister’s apartment.
3. I would think that a parade of people with disabilities in the middle of July is a health hazard for those involved (was September not available?).
4. When I booked the trip, AAR mentioned absolutely nothing about the parade.

The AAR person who called to tell me that the address I gave as a pickup was no longer valid asked me for an alternate address. I gave her one that was not too far away on Broadway. I was then told that was invalid as well.

At this point, I’m not sure what should have been done on my part, mostly because this scenario was not my fault. The original plan was to hang out with my friends, stay over at my sister’s place, and then take AAR back to Brooklyn the following morning. This would maximize friend time. Alas, it was not to be.

As much as people might say, “But didn’t you know?” the fact is no, I did not know. I booked a trip and was told that everything was fine. I proceeded about my day as though everything was fine, only to be told, by the same organization about 24 hours later, that it was not. This call, of course, happened while I was already in Manhattan.

I could’ve kept playing “guess the address” with the AAR person until I picked a location so far away from the original stop that I would have had to get up half an hour earlier than intended (FYI, I was planning to get up at 6:30am to get to the original pickup spot). Simply saying, “Can’t you pick me up a block away?” is not enough. You have to provide an address with cross streets. Not prepared for this change in plans, I freaked the hell out in the middle of a coffee shop while out with my friends.

To be clear, I do not enjoy freaking out in front of my friends. They know that I am, by nature, stressed and prone to fearing that the sky is going to fall, but I like to keep my meltdowns private (usually in the form of closing the door to my bathroom and screaming as loudly as I can). I do not respond well to having my plans shift to the point where I no longer know how I’m going to get home. The express bus that goes to my parents’ place was going to be rerouted on account of the parade as well. I could hop on the express bus that night, but what if the lifts weren’t working? Uber and Lyft suck. Why didn’t I check the parade schedule before I made plans? Why is checking the parade schedule now a requirement for making plans in Manhattan? You know the DOT doesn’t update the weekend traffic advisories until a few days before the weekend, right? (On a related note, who plans a parade in the middle of July? I don’t think I could even participate in this parade in the future on account of my complete inability to regulate my body temperature.)

My friends, because they’re my friends and I love them, calmed me down and humored me as I dragged them to my safe space (i.e. Sephora). After dinner, they wheeled me back to my sister’s apartment after I was too woozy from tequila to wheel myself in a straight line. Tequila isn’t the answer to life’s problems, but it dulls paratransit-induced rage to an impressive degree.

Now, the fun part of this story comes after I’ve called home and asked my mother to drive into Manhattan to pick me up later that evening. I could have asked her to come in the morning, but then she would’ve hit whatever traffic the parade caused (I’m sorry, I love disability pride, but I hate parades. All of them). My mother picks me up, and we go back to Brooklyn.

The next day, I got a phone call that my AAR was going to pick me up in 13 minutes at the Broadway address I gave. If you’re confused, then great, I’m not alone. Turns out that the address that was deemed “invalid” was put into the system anyway, and wasn’t blocked off by barricades at all. I called AAR to say that I had to find another way to get to my destination address last night because I was told that the alternate Broadway address wasn’t going to work. They made a note of it and said I wouldn’t be charged with a late cancelation (basically, you rack up enough late cancelations, you lose booking privileges). About twenty minutes later, I got a call from the AAR driver asking where I was. I explained to him the whole mix-up, and then wondered why no one at AAR bothered to tell the driver that I wasn’t going to be at the pickup location. It’s not like I have access to the AAR dispatcher and can call them myself.

The most frustrating thing about all of this is that I could have gone with my original plan and stayed over with my sister. I could have spent more time with my friends. I could have avoided asking my mother to drive into Manhattan. I could have avoided feeling overwhelmed and stressed from the fact that my ability to go anywhere is dependent on an unreliable service.

And I could have avoided the guilt I felt from not knowing street closures in advance. This isn’t something I would’ve had to deal with pre-injury. If one subway station was closed or unavailable, I could have walked to the next one. If my Uber driver couldn’t get to my original pickup location, we could have worked out an alternate location with minimal confusion within minutes of the pickup. Having a mobility impairment and being reliant on paratransit means you have to make your plans in advance, be aware of all potentially relevant street closures (because paratransit won’t tell you until it’s too late), and have at least two alternate addresses written down in the event that your initial pickup location is deemed not doable. What other door-to-door service puts these sorts of expectations on their customers?

I could say that AAR has two strikes, but it’s not the most effective metaphor, because there isn’t going to be a third. There can’t be a third. And if there was, I’d have to ignore it. Three strikes mean you’re out, and I can’t leave AAR. Even though this service is awful, it’s the most realistic option I have that doesn’t involve treating my mother as a chauffeur, or spending $40-50 for a taxi. Heck, I renewed my membership last month for the next five years. As someone who wants to live in New York for the long haul, my options are either to tough it out and download a bunch of podcasts (or angry music) to listen to while I wait, or move to Manhattan.

Whenever I have a bad experience with AAR, I tell myself that maybe I got unlucky with my pickup, or that maybe there was some confusion over at AAR headquarters or whatever. Maybe next time will be better. Or maybe my optimism really is adorable.

Thanks for reading! Have a similar paratransit story? Feel free to share it in the comments so that we can complain together. And, if you want to read new blog posts in your inbox, then please subscribe!