Spoiler Alert: There’s No Door Prize For Prioritizing Pride Over Pain!
By: Katherine Itacy, Esq.
Back in December, I wrote a bit about what it’s like to Travel While Disabled (TWD).
Since my tethered spinal cord returned in late 2015 and began permanently disabling me, I’ve had to face some pretty harsh realities as to my physical and medical limitations. I’ve gone from being a serious weight lifter and elite athlete to being unable to leave my bed most hours of most days.
I don’t go on walks or engage in any aerobic physical activity anymore, and rarely leave the house more than two or three times a week. Sure, it’s helped me save a ton on gas, but it’s also been quite the challenge to quell my active mind.
So when I do have to travel, I always make sure to carry my Candy Apple Red Hurrycane with me. I’ve gone from carrying a pocketbook to sporting some pretty cute backpacks, and I make sure that any luggage I don now is equipped with multi-directional four-wheel spinners.
And given the fact that I’ve fallen (with injury) three times over the last two years due to my neurological deficits, I’ve now taken to bringing along my life alert system with me on the road.
My stubborn ass continues to think I’m going to win some Karmic prize by refusing to ask for or accept assistance to accommodate my disabilities. It took me a few years to even use a cane; then, once I did, almost another year before I even thought to accept rides from the TSA carts that will bring you to your departing gate and/or to the baggage claim area. I had to find myself in dire pain before I’d ask for a wheelchair escort on really bad pain days, and until a few months ago, never would’ve dreamt of using priority boarding.
The thing is, all of these accommodations aren’t merely ‘perks’ of being old or disabled — they’re in place for exactly why I and so many others use them: to make traveling not quite so difficult and painful for those with mobility issues.
So when I decided to book a trip to Portland, Oregon, to attend the annual Association of Writers & Writing Programs (AWP) Conference this past week, I begrudgingly noted during the online registration process that I would need disability accommodations during the conference. I let them know that standing and sitting were too painful for me, and asked if I could use a spot in the back of the conference rooms to sit on the floor and set up some cushions to lie upon.
Lying against the wall with back and coccyx memory foam cushions was the closest I was going to get to bringing my mattress with me and plopping it down on the floor. Probably a bit more professional, too…. Of course, the organizers readily agreed to my request, so I thought I’d be in pretty good shape to attend the conference. I even purchased a new carry-on with the appropriate wheels so that I could more easily carry around my cushions throughout the Oregon Convention Center (“OCC”).
I boarded my flight on Wednesday morning, thinking I’d done a pretty good job of securing the requisite disability aids to get through the conference with as minimal pain as possible.
Then I arrived at my final destination.
First of all, I’d secured a room at a hotel near the airport, since all of the official conference hotels were way too expensive and/or sold out by the time I registered. Fine, except that it was near exactly nothing — no grocery stores, no restaurants (but for the hotel’s own restaurant, which did not exactly inspire confidence in me as a potential patron….) — nothing. The hotel was in an industrial park near other industrial parks, and I was without a rental car.
I realized that if I wanted to be a responsible diabetic, I’d have to find a place to stock up on some food items for the room. But that meant taking the hotel’s shuttle back to the airport, then getting on the MAX Light Rail (the name of the train in Portland, which is part of the state’s “TriMet” public transportation system) to the nearest Target.
Fine, except that I’d then have to lug my groceries around with me through the parking lot, across the street to the train platform, back on the train, across the outside of the airport and back onto the hotel shuttle. It ultimately meant more walking with heavy objects, which is not exactly ideal for someone with chronic pain and several nerve disorders (all of which are inflamed by walking and carrying heavy objects).
The shuttle/train mode of transportation was also how I’d have to get back and forth from the OCC, which would’ve been fine (and was certainly a rather inexpensive option), except that it tended to add a good hour, hour and a half to the beginning and end of each day. Not great when I was already going to be in a great deal of pain and fatigue from simply attending the conference.
I had a really long day of travel on Wednesday, and had decided to attend a fundraising gala that night for a mentorship program for new writers, so I settled back into my hotel room rather late on Wednesday night. I reluctantly decided to skip the first session on Thursday morning so that I could at least try and get a few hours of sleep. I took the Light Rail to go get some breakfast, then went inside the OCC to register.
I shit you not — there were at least 1–2,000 registrants waiting in line when I got there! The check-in line was honestly longer than a line at the Apple Store on the first morning that a new, exciting product becomes available for purchase.
My mouth was literally agape at the size of the registration line. Once it sunk in just how far away I was from the registration table, I got pretty nervous about how long I’d have to remain standing before I could finally attend a panel session and set my cushions up on the floor.
But did I ask for help? Did I let anyone there know that I had a disability and couldn’t bear to stand for that long? Nope!
Instead, I wheeled my carry-on bag and used my cane to find the back of the line and start waiting.
It took a good fifteen, twenty minutes before an OCC employee made his way to the back of the line in order to check and see if anyone with a disability needed assistance. Even then, I almost didn’t take him up on his offer to show me the disability registration line! For some ridiculous reason, I was feeling guilty that I’d be leaving my linemates behind and ‘skipping ahead’ to the front of the line. My new friends assured me that they’d take no offense to me using the line I belonged in, and with that, I made my way up front.
I was really grateful that the AWP employees had created a separate registration line for those with disabilities, but it wasn’t long before I realized just how difficult it was going to be to get around to the different sessions. The OCC’s website notes that it has 255,000 square feet of conference and ballrooms within its facility. And the AWP Conference schedule only allotted fifteen minutes for attendees to make their way through the bathroom and/or food lines and then hike it to the location of their next session.
That first day, I attended a disabled writers panel discussion, and I listened as several other attendees loudly expressed their disappointment at the impossible structure of the conference’s physical layout and unrealistic break times. One woman noted that even one of the presenters decided to pre-record his session instead of physically attending and trying to maneuver his way to and from the rooms in the narrowed and crowded walkways.
Another woman noted that she’d been finding herself in so much pain from trying to attend each session that she was using one of the established break rooms to go in and (semi-)privately weep. I can’t say I blame her, either — before the end of that first day, I, myself was holding back tears of pain and fatigue.
In the end, I skipped sessions on the first two days and skipped the third (and final) day altogether. I even tried to find an earlier flight so that I could try and get back to my own bed and amenities sooner, but yet again, Orbitz reminded me just how big of a waste of money it is to purchase travel insurance while booking a flight with them….
I was trying to take my time and take breaks when necessary, but each time I did, I was severely stressing myself out that I was missing panels that I’d paid good money to attend. In fact, it never would’ve occurred to me to skip Saturday’s sessions, had my BFF/sister from another mister, Nikki, not suggested it to me after hearing how much pain and discomfort I was in.
This trip very clearly reminded me that we’re not in Kansas anymore, Toto.
I’ve been out of work/retired/disabled for over two years now, and I’m still finding myself acting like an asshole when it comes to my pride and my pain tolerance. Who in the hell cares if I have to skip a session or cut a trip short or even cancel a trip altogether if I’m too fatigued or in too much pain? Anyone who gives a damn about me would want me to just stay home and take care of myself, so why am I holding myself to a different standard?
Being disabled doesn’t mean you’re weak. It doesn’t mean you’re lazy or self-indulgent. It means that you have physical and/or mental limitations that make living in an able-bodied world more difficult. And yes, we thankfully do have some public accommodations for those with disabilities, but for practical, financial, or other reasons, society has yet to level the playing field for those with disabilities. Sometimes, it’s just going to suck to try and maneuver around as a disabled person. Sometimes, no amount of accommodations are going to allow me to participate as I would have when I was more able-bodied.
Having lived with at least one disability for practically my entire life, I’m well aware that I got dealt the fuzzy end of the lollipop stick. I’ve made my peace with having a tougher health battle than many others have. But there’s absolutely no reason why I need to face the battle with one hand figuratively tied behind my back!
No one’s judging me for my disabilities, and if they are, they don’t deserve my concern. Likewise, no one’s sitting there, keeping track of just how stubborn I can be, awarding me points each time I stupidly decide I can try and push past the pain.
The very least I can do for myself is to accept the help that’s readily available to me. Ideally, I should also be checking my pride at the door and actively requesting any and all help that I may need; I should be more realistic as to whether I can physically handle participating in a given activity, and if/when I find myself struggling during a particular activity, I need to advise myself to do the very same thing that I’d advise a loved one to do in the same situation.
All in all, this trip was really painful, and I probably only attended half of the conference. Of course, I’m glad that I was still able to meet some great people, learn a bit from far more experienced authors than I, and get a better understanding of the writing profession in general.
But I also deluded myself into thinking I’d be able to participate fully in this conference, and failed to ask for/create sufficient accommodations for my health once I realized that they weren’t publicly available to me.
I need to keep working on being kinder to myself. My eyes are always going to be bigger than my stomach, so to speak, so I have to be better about shutting shit down if I’ve bitten off more than I can chew. It’s ultimately up to me to figure out what I need and what my limitations are, and to enforce those requirements and restrictions. It’s also going to be up to me to ask for help when I need it. I know, quite the shocker, but it turns out that others can’t read your mind and automatically know just how much pain you’re in or how much help you need.
My pride’s going to keep taking hits, but it’s better that my pride suffer than my body. The poor thing’s been running full throttle for far too long already!
ABOUT THE AUTHOR
Kate is a disabled former criminal defense attorney living with her husband in Detroit, Michigan. Publication of her memoir, From National Champion to Physically Disabled Activist: My Lifelong Struggles with a Diseased Body, and the Lessons it Has Taught Me Along the Way, is forthcoming.
She hopes that the book will empower young men and especially young women, with or without physical disabilities, to strive towards their goals and to view life’s obstacles as opportunities for self-growth, not as barriers.
You can email Kate directly at firstname.lastname@example.org.
In addition to her blog, Kate also hosts and produces a podcast entitled: “Hear Me Roar — with Kate Itacy.” You can find the podcast’s website at http://hearmeroarpodcast.com.