Chapter 26 - Interacting with the public

Just to give you an idea of what it’s like to go out in public with a very visible disability, or at least my particular disability, here are a few of the more interesting or strange interactions I have had.

Trader Joe’s parking lot

I don’t think I had been driving solo for too long before I became brave enough to attempt to navigate the Trader Joe's parking lot. Even before being paralyzed and while in a normal compact car, that parking lot is the physical manifestation of anxiety; there are just too many people, and the dimensions make everything feel claustrophobic. Doing it in a giant lifted van without the ability to turn your head just compounds those issues. That day, I crept through the parking lot until I made it to and squeezed into the handicap parking spot with the van loading zone, hoping that no one parked too close to my van, blocking the ramp and my access to it. My shoulders dropped as I exhaled a mini sigh of relief as I thought I was done with that stress, at least until it was time to leave. Well, I was wrong; as I shut the van off, an older white woman in her 50’s or 60’s appeared in my window, mid-sentence, obviously quite upset with me. It took a second to catch up but once I did, I realized she was lecturing me for parking in the handicap spot. To be fair, I don’t have handicap plates, my handicap placard on the rearview mirror was partially hidden by a parking placard for my apt, and there aren’t any other signs it is a handicap van, unless you are really looking. So, from where she started her lecture, it wasn’t obvious she was wrong. To her discredit, not only did she continue after arriving at the window, where my wheelchair, handicap controls, and placard were all visible, she continued as I ROLLED out of the van down the ramp… as soon as I was out and closing the van, her lecture just petered out; she didn’t stop and apologize, just lowered her volume to a mumble, turned, and walked away. In retrospect, she has probably had people park in handicap spots that she needed multiple times and her frustration was just running the show. The fact that I chose to just be silent and laugh, probably just enraged her further, blinding her to the obvious. But people are weird so who knows, maybe she just wanted to pick a fight, the Trader Joe’s parking lot can have that effect.

Safeway parking lot

One day, relatively early in my recovery, I was at the grocery store and I was trying to get back in my van. I say trying because as I tried to push up the ramp to get into the van but realized my front caster wheels were lifting off the ground, meaning I was about to flip backwards. I quickly stopped pushing and tried to lean forward; no panic yet, I knew my anti-tippers on that chair would catch me if I didn’t quite make it. Sure enough, I ended up tilting back onto the anti-tipper bars, safet… SNAP! Oh shit… the left anti-tipper broke in half and the additional stress then bent the right one, allowing me to fully flip over backwards.

Because of my seatbelt, I was still attached to my chair but folded in half, staring up at a rectangular bit of sky, framed by my cushion and my legs, which had flopped behind my head. If nothing else, I could be impressed with my flexibility? My legs were acting as blinders, so I couldn’t see anything around me; so, I was pleasantly surprised when two concerned faces popped into frame. It was a sweet couple who had apparently seen the whole thing unfold.

Them: “Are you ok?”

Me: “Oh yeah, yeah, just some pre-drive yoga…”

Them: “Really!?”

Me: “Uhhh, definitely no… I’m fully turtled over here, please help!”

They were super sweet and quickly had me upright and offered to give me a push into the van, an offer I happily accepted; I was not in the mood to give that move another try, especially because my “safety feature” was now just a bunch of mangled bits strewn across the parking lot or left pathetically dangling from the back of my chair.

Even with the ramp, getting into the van has always been tricky for me when I am in my manual chair, even the one with the power assisted wheels. It’s really difficult to modulate the amount of power you are applying to the wheels such that you are making progress up the ramp but not so much that the front casters start to lift up off of the ramp, the first warning that you are going to flip.

Red Rocks – Father John Misty

My friend Will came to town from St. Louis to hang out and timed it so he was here while the band Father John Misty was playing at Red Rocks. I had never heard of them but one of Will’s friends was working on the tour and had left tickets for him. Neither of us had been there for a show; I had been there a few times randomly during the day, just because, but Will had never been there at all. Being in a wheelchair meant that we got to go to the front row, reserved for handicap seating… though, companies buy these seats and sell them to fully able people with the understanding that no one can ask what your disability is or verify it in any way. The staff there was amazing and the venue was really well set up to help people in wheelchairs, in my singular experience.

At some point in the middle of the show, which was great btw, we went out for a second, to smoke, go to the bathroom, etc. While we were out there, I decided to do a weight shift, where my power chair reclines the whole seat or seatback; like if someone sitting behind you tipped the chair you are sitting in back into their lap, leaving you staring at the ceiling. I guess I looked pretty helpless, tilted back, in a giant chair, with my friend standing next to me looking like a caretaker, because a cute, but drunk, woman came up as I was coming back to sitting upright and asked if she could hug me… I think I remember an audible “aww” as she came up but that might just have been her aura screaming out. After hugging me [because as patronizing as it was, in the moment I didn’t mind a hug from someone cute; also, she might just be on MDMA and want a hug, I’ve definitely been there], I don’t remember what she asked or what my answer was, but I do remember her slight surprise that I was not mentally disabled. One of my favorite correlations people make, sees wheelchair, starts speaking loudly and slowly. I think the more sober people she was with were cringing appropriately, not really knowing a good exit strategy, forcing them to just wait it out and hope it didn’t get worse.

Prayers on the Boulder bike path

Boulder has a great series of bike paths and hiking trails that wind throughout the city, stretching out into the plains and up into the foothills. The bike paths are perfect for full speed runs in the power chair and the consistent passing of other people means that if something goes wrong, someone will eventually come by. I loved rolling down the path and just soaking in the sun and enjoying the semblance of isolated hiking. On the other hand, occasionally, that serenity would be shattered by some random person.

For example, one day I was exploring the multi-use paths starting behind the hospital where I had my surgery, and as I rolled past an apartment complex, I heard a woman shout, “Excuse me!” and I did what any reasonable person would do and I completely ignored her and kept rolling, minding my own business; she didn’t sound distressed. However, when I heard her call out again, I figured I had to stop and see if everything was alright. Big mistake. When I turned around, she was walking across the parking lot towards the path, greeting me with a smile, a wave, and a “HI!” …all a little worryingly enthusiastic. Full disclosure, I don’t remember how the conversation started but we quickly came to my paralysis and she was asking if she could pray for me; I just thought, “what the hell, she can do whatever she wants with her time” and I gave her a quick, “oh, sure” and prepared to take off. Well shit, I knew I had fucked up as soon as I felt her hand on my shoulder, prompting me to look up in horror as she closed her eyes, bowed her head, and began to recite her prayer right there. I should tell you that religious folks, mostly Jesus-oriented, stop me to ask if they can pray for me routinely; however, this prayer was… more aggressive?

When she started talking about bathing me in the blood of Christ, I started getting a bit worried about where she was going. Keep in mind I have the defensive capabilities of a strong toddler. Turns out she was just asking God to heal me, which seems like a wild proposition [in your world, didn’t (s)he do this to me in the first place? And what were they waiting for? This interaction? … suspect]. When she finally finished her prayer, which was probably only 15 sec long but felt like 15 min, I looked up to find her staring at me with a slight grin, apparently quite pleased at what she thought she had accomplished. “Well…?” she inquired, at which point I realized she was expecting me to stand up… Aaaaawkward… I have never tried harder to not spasm and make her think it worked; not that I have any control of my spasms. I don’t remember how the conversation ended but I do remember her checking multiple times if I could walk and even having to apologize to her for still being paralyzed.

Falling in the snow

2 years or so after leaving the hospital, I was living on my own in an apartment just across the street from the hospital I was first admitted to after my accident, just by coincidence. It was the middle of winter and the snow was coming down pretty quickly. There was already a significant blanket of snow covering everything. I decided to go to the dispensary to pick up a few THC cartridges for my vaporizer pen, but instead of taking my power chair or the car, I made the genius decision to take my manual chair with power assist wheels. In retrospect it seems impossibly stupid, but I guess I figured that the sidewalks would all be shoveled? Maybe there wasn’t as much snow on the ground as I remember? I started getting dressed, preparing for the snow, and it felt vaguely reminiscent of getting ready to go hiking. Maybe that is why I chose the manual chair – it was a bit of subjecting myself to a little of that familiar struggle vs the elements. Things started a little slow as I made my way down to and across the complex’s parking lot, but once I got to the sidewalk, I was off to the races. One important bit about those power assist wheels is that they can be tricky to keep going perfectly straight, if you push a little harder with one arm vs the other, the chair can veer to the side. Well, that is exactly what happened when I was about ¾ the way to the dispensary; I missed my right wheel as I swung my arm forward to push the chair, causing the chair to quickly veer right. I thought I would just run into the grass and have to reset, and I was not expecting to run into the edge of the grass like it was a brick wall.

The chair lurched into the air, lifting the large rear wheels into the air, and rotating me and the chair, bringing me down sideways but upright. For a brief second, I was elated that I didn’t get flipped forward over the front of the chair. That was quickly shattered by the realization that I was now tipping sideways faster than I could save. Sure enough, I found myself crashing to the ground, throwing my arms out, trying to save my head from hitting the sidewalk. I had my lap belt on so I stayed attached to the chair, laying on its side; I couldn’t undo the lap belt and there was no way of getting myself up as long as I was attached to the chair. I remember laying there trying to figure out what to do, watching cars drive by with no one stopping to help. I spent a few minutes desperately hoping that someone would stop to help, but soon realized that no one was going to stop; I don’t even know how many times I yelled, “aww, what the fuck!?” as each car drove by. I started searching for my phone, which is typically sitting in my lap so that it is close if something like this happens; it was laying on the sidewalk a few feet away, just out of reach. As I started scooting myself down the sidewalk, dragging the chair with me, I noticed a car pulling into the parking lot on the other side of the grass. I initially thought someone might have seen me and decided to help. Nope, just a family going to brunch. I started waving my arms and calling out, but I don’t have the strongest voice and it was somewhat unlikely they would hear me, even though they were only 100 ft away, give or take.

Thankfully one of them did notice and they came jogging over to help, catching the attention of a second group to come check out what was going on. The first group of three didn’t speak the best English but were doing everything to understand and help. When the next two guys showed up, they were able to quickly get me detached from the chair, get the chair upright, and get me back in the chair. After checking me out a bit for any obvious bleeding, I only had a few minor scrapes and bruises, one of the guys, wide eyed, asked “Dude… how long have you been down there?” I just laughed and thanked them profusely for actually fucking helping. I’ve tried to convince myself that people aren’t just trash and that no one in the cars saw me, but given the number of cars passing and how much I stood out against the white background of the snow… it’s not likely. Thankfully, there are some good people out there, and I didn’t have to call 911 that time.

Getting a lift at CU Denver’s medical campus

Because I use such a unique transfer method [that I learned from someone else] and still lived near Denver, I was asked by some of the therapists to come to the CU Denver Anschutz medical school to be one of the SCI patients to answer questions and demo the transfer method to future physical therapists. I really enjoyed participating, despite my strong dislike of public speaking; most probably because just being asked to participate felt like a little ego boost. I parked in one of the nearby parking lots that had nice sized handicap van loading zones [those striped areas next to handicap spots]. I parked in that same spot every year I participated and never had any issues. However, when I was rolling up to the van to leave the last time I went, I noticed that someone had not only parked in a handicap parking spot with no plates or placards, but they had parked over the line and into the loading zone next to my van. I have no sympathy for people who do that, and so I opened the van, knowing the ramp may hit their car; actually, probably hoping it would. Well, it just barely touched the side of their car before dropping down, leaving no way for me to access the ramp. Calling to get them towed crossed my mind but it was cold and that option would take more time than I wanted to wait. As I sat there with my rage meter filling at an alarming rate; “how could someone at the med school campus be so stupid?” I saw some guys paying for parking and I rotated that dial from rage mode to customer service mode. “Excuse me!” I called out like an over eager volunteer trying to get you to sign a petition. I didn’t even have a plan for how they could help but I was aware I couldn’t do anything on my own. Thankfully, I was in my lightweight manual chair and not in my massive power chair, so when the guys came over, they were able to just pick up my chair with me in it and carry me onto the ramp and give me a boost up inside the van. I guess a theme here is that the occurrence of shitty people is typically tempered by the appearance of good people willing to go the extra mile. However, being only a situationally good person myself, I definitely emptied my catheter bag on the driver’s side door handle of the car blocking me in after the people helping had left.

Craft brew festival at CU Boulder

During my first semester back there was a craft beer festival that was held in the basketball gym. My only experience with that building was taking midterms and finals for the huge lecture classes like the introductory Chemistry and Biology classes. I was pretty excited to go; I hadn’t really gone out for anything or had more than half a beer since my accident. It was a pretty good introduction to all the things that people say that make you want to shove broken glass in your ears:

                “Woah, slow down, speed racer.”

                “Uh oh, drinking and driving?”

                “I totally get it; I was in a wheelchair once”

                “Aww, it’s great you are getting out”

                And so many more

People generally mean well, but alcohol tends to liberate peoples least intelligent impulses. Either that, or people just really don’t think about what they are saying. Also, that day I had my hair buzzed really short, my go-to haircut, and I was wearing a drab green canvas jacket from The Gap that I bought in Japan. The jacket had a Rastafari flag patch ironed on to the left sleeve at the shoulder and was lightly distressed from years of use. The description is mostly to say that it did not resemble a military issue jacket, aside from being green. Multiple people saw the haircut, the jacket, and the wheelchair and had the overwhelming compulsion to approach me and thank me for my service. It put me in an uncomfortable situation; the fastest way out is to just say thank you or nod, but I don’t want to act as if I served; but saying I didn’t serve seemed to act as an invitation to a conversation about how I did get injured, which I don’t want to be a part of. Needless to say, I don’t really wear that jacket in public anymore.

General comments

Look, I get it, interacting with people that you don’t have experience interacting with can be a minefield. Statements like “I couldn’t do it,” “you are inspiring,” or “it’s amazing that you can ____”, are not as complimentary as people think they are. “I couldn’t do it” is another way of saying “I’m impressed you don’t just kill yourself because that is what I would do.” I’m not saying to not compliment or encourage people with disabilities, just think before speaking and maybe not have a disability be the main focus of the interaction. Again, I can’t speak for everyone but those seem like pretty solid rules for interacting with any human; think before you speak, and don’t make people’s physical appearance or abilities the focal point of your interaction, unless they make it the focus [model, athlete, advocate, etc.]. Whoever says it’s easy to not insult or offend people is either just having boring superficial conversations or can read people’s minds. What makes one person laugh will offend another, there really is no “right” way to interact with handicap people. If you ask about something, it may come off as being nosey or triggering; but if you don’t ask anything, it may seem like you just don’t care. My only advice is to treat people like they matter and be willing to listen and adapt to what the other person needs. You are going to fuck up, it’s okay. Also, keep in mind that some people are just looking for an outlet for their anger and frustration, even if you do everything right, you might just be that lightning rod. Try not to take it personally.