On Transportation (part two)

2018 VMI-converted Honda Pilot

Five months later – out of seemingly nowhere – I had another issue with my accessible vehicle. I went out to dinner with a friend (who I had not seen in ages) and when we got back to my house, she opened the back passenger door and the handle fell off. Fortunately, it fell off after she had already gotten the door open and I exited the vehicle. Hoping it was something we could re-affix easily on Monday morning, I didn't lose any sleep over it. It turned out, however, that the handle hadn't just slipped off the metal shaft, it had physically broken. So when I went to get in the van to do some erranding on Monday, reattaching the handle was trickier than I anticipated. If you held it just right it unlatched the door, but it wasn't catching the way it was supposed to. Nevertheless, we loaded me into the vehicle and drove to Honda to ask some proper mechanics for advice. The mechanics graciously examined the broken handle, explained that it was part of the modified portion of my vehicle and directed us to Home Depot to try to find a replacement handle. We headed to Home Depot and unfortunately found nothing, but we were able to get the van door open so I could accomplish my shopping at T.J. Maxx and pet smart. Suzanne, my new-ish caregiver, and I arrived back at my house around 4 PM.

Unfortunately, the broken handle decided it was done for the day when we returned. The handle wouldn't catch on the metal rod attached to the latch, so the piece that kept the door securely closed would not release. Panic slowly set in for Suzanne as she envisioned transferring me – sans wheelchair – out of the passenger door, when I noticed a truck parked on the street in front of my house: "Suzanne, go in the house and see who's here? Maybe it's a man that knows how to fix things!" (Not very feminist of me, I know, but when you are me and you have gotten yourself into innumerable pickles, you start to know when to outsource your problems.)

The broken door handle

Suzanne came out of the house – not only with a man – but with my mom's contractor. A handsome, industrious man who had just happened to be the one that converted our previous dining room into an accessible living area for me. I started to think that Bella, one of my dates to the wedding in part one of this story, was right when she said, "God has favorites and you are one of them!" Art (the contractor) came out to the car, diagnosed the problem and retreated to his truck for a proper tool. He then affixed a channel lock to the metal shaft and was able to gently coax the shaft to rotate in order for the latch to release. I was free. Suzanne was ecstatic. Art then generously left his channel lock in my van so Suzanne could get me to school the following day. All was right with the world. At least temporarily.


I called United Access the following morning and explained the broken handle and asked if they could order me another one. They told me they'd let me know when it arrived and that the Pilot should probably be checked out in their Syracuse location for a full assessment and reinstallation of the handle. In the meantime, Shelly, my personal MacGyver, replaced the cumbersome channel lock with a smaller wrench which continued to get me in-and-out of the van with no issues. 10 days later, the new handle had arrived and my mom and her angel of a boyfriend (Russ) trekked up to Syracuse on a Friday morning for things to be checked out and the handle reinstalled. The two of them left the pilot at United Access and went to lunch with a friend thinking my car would be ready to go within a few hours.

It wasn't.

My mom texted me around 3:30 telling me she and Russ were heading back to pick up the car and they'd likely be back by five. Relieved, I continued doing whatever I was doing and didn't give it another thought. Then my phone rang: United Access Syracuse. This couldn't possibly be good.

I answered the phone, already prepared for the bad news, "Oh no, what's the problem?"

Mike replied matter-of-factly, "Kate, we were just showing your mom how well the door opens with the new handle, and it wouldn't open. We did some further investigating and the cable on the inside of the door is corroded. Your car is unsafe to drive. Your mom and Russ will be getting a ride back to Ithaca with your brother, we're gonna need to keep the car until this gets fixed."

I immediately understood why my mom didn't want to be the one to share that news with me. I proceeded to lose my shit.

"What do you mean the car is undriveable?"

" With a corroded cable the door is not latching properly and it could fly off on the Thruway."

" Can you give my mom an accessible rental van to get home with?"

" We don't have any in stock currently."

I exited the phone call shortly thereafter, seething with anger and too disappointed to even use my words.

One of my friends told me once that he thinks I am incredible at getting myself out of jams. At that moment, though, I felt defeated. I felt defeated because that phone call happened after 4 PM on a Friday – how the hell could I find an accessible vehicle before the close of the business week? It was Russ's birthday weekend and I'd made surprise plans for him at a karaoke place in town, and we had dinner reservations afterwards with his daughter. Plus, the day after was the last regular season hockey game and Madison and I had season tickets. Was I just going to sit home all weekend feeling sorry for myself?

I called Shelly. Shelly can usually fix anything. She had just fixed my door temporarily. I called her and gave her the rundown and we both started thinking outside the box. We wondered out loud: does the local rental car company have a minivan I could rent and we could pull out the seats in the back and use my manual ramp to enter? No, that wouldn't work because my wheelchair's too tall and regular minivans don't have lowered floors. Shelly suggested putting me in the back of a U-Haul – sometimes they had trucks with ramps. We could potentially put the wheelchair in the back and transfer me into the front seat; it would definitely be a hassle but it could get me out of the house with my wheelchair. Shelly jumped in her car and drove downtown to the U-Haul company before it closed, and I started making phone calls. First on my list: Tompkins County Airport transport. They answered and told me they thought either Yellow Cab or College Town Cabs might be a possibility, but the airport itself did not offer accessible transportation. I then called Yellow Cab. Apparently they used to have an accessible vehicle but they did not anymore. They advised me to call College Town Cabs. I did.

"Hi there, my name is Kate and I'm wondering if you guys happen to have a wheelchair accessible cab?"

"… (Awkward silence) why yes, ma'am, we do. When do you need it?"

"No way, that is such fantastic news! I'd need it tomorrow around 3:30, and then again at 5:30 PM just to get to dinner locally."

"Oh, I'm so sorry ma'am, it is not available at all tomorrow. And the man who drives the van does not give rides after 5 PM."

" Oh, so I couldn't reserve the van to get to the hockey game this weekend?"

"No ma'am, the accessible van is not available on the weekends at all."

The conversation continued much like this for another 10 minutes. Whoever this mysterious man who is in charge of driving the one accessible cab in all of Ithaca, works only very specific hours and is booked out for weeks. Could I reserve it to get to school on Monday? No. How about school on Tuesday? No. Could I reserve it to get to my dentist appointment on Wednesday? No. Could I reserve it to get to a research study at Cornell the following Friday? No.

To use another of my friend Bella's favorite expressions: Christ on a bike!

Shortly thereafter, Shelly returned from U-Haul – their current inventory would not accommodate my chair. I was flummoxed. And back to feeling helpless. How – in a world where artificial intelligence can now write full essays for students and Elon Musk is transporting people into literal outerspace – could I not figure out a way to get myself (and my 360 pound wheelchair) out of my house?

Shelly and I decided not to cancel the surprise karaoke plans. I sent my mom out the following morning to retrieve my manual wheelchair from a family friend (who was not using it anyway), my mom cleaned off the dust and cobwebs from years of nonuse and we decided I would transfer into Shelly's passenger seat, head to K house the next afternoon, and sit (albeit uncomfortably) in my manual wheelchair during karaoke. Then, my mom changed the reservations for Russ's birthday dinner to a restaurant within a mile of my house so we could come back to the house immediately after karaoke, transfer me out of Shelly's car and back into my power wheelchair where, together, Russ and I could "walk" to the restaurant.

Shelly (a.k.a. MacGyver) and me at K-house

So with a few added complications (and additional transfers in and out of regular cars), I survived the weekend without an accessible vehicle. I even made it through a 2 1/2 hour hockey game sitting in my manual wheelchair. I had not, however, figured out how I was going to get to school, the dentist or the study at Cornell the following week. It was a problem no one could solve until Monday.

By 8:30 on Monday morning I had already called United Access in Syracuse to check on the status of my car (they were still waiting to hear back from VMI), called 311 (per someone's recommendation) to get information on accessible transportation options in Ithaca and then called Gadabout to learn how to become eligible for its ADA paratransport program in Tompkins County. Even if United Access suddenly had a rental car available, I was vehemently opposed to paying $150 a day for the indefinite amount of time we might be waiting for a replacement cable on principle. Besides, using Gadabout could be empowering were I to ever find myself in this predicament in the future; it couldn't be too hard to figure out.

The thing I just cannot overstate, though, is how hard it is to accomplish anything without functional hands. Throw a 13-page PDF form my way that does not interface with my Dragon dictation software and I slip precipitously close – once again – to defeat. Luckily my caregiver on Monday morning was Jill, a recent OT grad from Ithaca College; someone with infinitely more patience and technical acumen than I possess. She helped me tackle the entirety of the application. But even with my able-bodied assistant, there were a number of questions throughout the application that we could not answer. I.e.) how does your disability limit you from taking the bus? I looked at Jill,

"Are all of the buses handicap accessible?"

"I have no idea."

Great, so in addition to being disabled I am completely ignorant about how public transportation even functions in Tompkins County. For example, I know there’s a stop at the end of my street, maybe 400 m from my front door, but where does that bus go? Does that bus have a lift and tiedowns to accommodate a wheelchair? Does that particular bus go to the high school? Would I need to research the specific bus routes that I may or may not be able to access? Jill quickly snapped me out of of my anxious hypothesizing:

"You really can't do any of this independently, because you can't even open the front door of your house to get outside. And if it's raining your head array doesn't work, and if it's too cold your neck is too stiff to safely drive your chair."

Oh yes, that is all true.

So we answered the questions as briefly and honestly as we could and sent it to the kind woman who worked for TCAT by early afternoon. Much to my relief I was approved for ADA paratransport by 5 PM on Monday – mere hours after the paperwork was submitted as opposed to the 7-21 days the website warned it might take for approval. The only bad news was that gadabout/paratransport was closed by 4:30 and one needed to request an accessible ride 24 hours in advance. I wouldn't be able to start scheduling the rest of the week until the following morning. After problem-solving this predicament since Friday afternoon, by Tuesday morning I'd finally be able to schedule the rest of the week.

On My Way to School

I called them in the morning as soon as Suzanne got me out of bed and attempted to schedule rides for three appointments that week – school by 1:30 PM on Wednesday, a dentist appointment by 1 PM on Thursday and a research study at Cornell University by one on Friday. Scheduling the rides was not difficult, but they couldn't tell you the specific time they'd pick me up until after 3 PM the day before. And then no one told you what time you'd be picked up after the appointment until the morning of the scheduled appointment. They tried to coordinate the rides to be within an hour of the proposed appointment time, but they couldn't make any guarantees. For example, I called on Tuesday after 3 PM to see what time someone would pick me up to be at school by 1:30 the next day. The answer? 12:15 PM. Then I had to wait until Wednesday morning after 8:30 AM to see what time they were picking me up (the day ends at 3:40). The answer? 4:45. So this is how it went. Paratransport offers an immensely valuable service to the entirety of Tompkins County and I could not for the life of me imagine the difficulty of coordinating rides to-and-from doctors appointments for every person that might qualify for this service. But at the same time, my mere existence already necessitates so much time that my tolerance for wasting it is nonexistent. Spending an extra hour on either side of an appointment waiting for and relying on public transportation – as grateful as I am that it exists for people with chairs like mine – pushed me just a little bit closer to the end of a very thin rope.

I have absolutely no idea what my life would be like were I able bodied, and I’m sure I could still find an amalgamation of things to complain about on a daily basis. But for those two weeks, I thoroughly resented the heck out of my current life. In addition to the oppressive amount of time and energy I waste on this disease (my morning and night routine, on a good day, takes a minimum of seven hours), if I think about the financial impact this disease has had on both my own bank account and my family's, I absolutely do lose sleep at night.   

All of that said, I made it through an entire week without an accessible vehicle. By Friday afternoon though – even before the Cornell research study (that should be a separate story of its own) – I did decide to call uncle on life without an accessible vehicle. We paid extra for someone from Rochester to deliver the only available accessible rental vehicle (saving my mom and Suzanne yet another trip to Rochester) and were grateful that despite a rate of $150 a day, we only needed it through the following weekend. The mysterious part that United Access had warned us would take 10 to 14 days at best to receive from VMI did arrive without any additional delays, and my Pilot was fixed exactly 2 weeks after it had been deemed unsafe to drive.

How well it was fixed, however, is a story reserved for part three.