Since getting back from out summer cruise, I’ve had one buggaboo in my head…and this late cool night in early autumn I feel a need to “discuss” it. I’ve been pondering how best to discuss it without actually offending anyone. I know I know, since when do I give a rat’s ass about offending anyone? Well let me see if this can make some sense. Here’s the gist of it:
Just because my legs don’t work, doesn’t mean there is anything wrong with me.
You see, when Shannon and I go on trips I tend to be a very chatty person. I like meeting new people, hearing a bit about them and inevitably, I get questions about “what happened”. The chair is a bit of a magnet for that…and it helps that I don’t mind telling the story. I had actually meant to use a bunch of alternative stories on this trip, for my own amusement and to make Shannon shake her head at me, but I never really got the chance. I did meet some wonderful people on this past trip. A gentleman from Bermuda, who was in a chair due to a broken ankle, there on his anniversary, who knew Toronto well, having boxed here in his youth. A couple who took pictures of my doing my ziplining (more on that later) that were there with over 20 family members for their parents’ 64th wedding anniversary. Our amazing server, Sochuila, from India, who had only been on her current contract for 2 weeks of a 7 month tour of duty where she would get no off days at all.
Then there was William. Yes, I recall his name…because of what he tried to rope me into…at least what it appeared he tried to (and this is backed up from the experience of my wife and friends on the trip). A 60-something-ish “pharmacist” from some southern US state…who took a very deep and decidedly creepy interest in me and my “condition”. The experience of this guy…I hesitate to say gentleman…really made me ponder how some people see those of us with disabilities…that somehow we are a project that can be cured. Bet you are even more confused now. Let me roll back to the beginning. I just wish I still had the guy’s business card.
Shannon and I met William by pure chance on about the third day of the cruise. He and his wife were on our deck, same side of the ship, though thankfully not all that close to our actual room. They used the same elevators that we did though, which is where he caught up to us as we stood in what became the normal dinner time convergence on the elevators at our end of the ship. On the back of my chair, Shannon has a backpack that has gone on just about every trip she’s ever taken, even before she knew me. It had a little badge with the Canadian flag on it. We hook this bag now on my chair to carry our various sundries…and of course it automatically identifies us…as if the chair doesn’t remove our anonymity as it is. With this in mind, I quickly, somehow became William’s Canadian friend on that elevator trip. I didn’t tell him too much, just that I had been in the chair for about two years and it was due to nerve damage from a spinal cord injury. At the time….nothing seemed too odd about it…if perhaps he was a little on the overly enthusiastic side to know the details.
It was the next day that things got…odd…and where I started getting annoyed not just with him…but with the knowledge that there are people out there with a very strange view of how those of us with disabilities might be “cured”. The next day, we met him again, in a crowded elevator, heading down for dinner. Despite being on the other end of the elevator without 5 people between us, he made sure to reach across and hand me a business card, saying that he thought the website on it might be a big help to me…and feel free to ask him anything about it. I took the card with an awkward thank you, trying to avoid the curious glances of everyone on the elevator….but the moment I looked at the card I had to groan quietly.
One side of it had a design I’ve seen many times as a very cool tattoo. The words Life and Death, merged in script so that if you read it one way, you got one word, and the opposite when you flipped the card. Ok….interesting. The other side was what got me groaning. A biblical quote…and this is where I wish I still had the card so I could repeat the quote…but what really caught my eye was the website…something about ending recidivism.
Recidivism? Huh? Confused the daylights out of all of us as we discussed it at the table…after all isn’t recidivism normally about the rate of recurrence of criminals repeating their offences and going back to prison? Well that was what I thought. Of course, we were on a cruise…and I wasn’t about to spend $50 a day for crappy internet to look it up (or go searching through the library for a dictionary. So before I continue the story I should get that definition of recidivism that I looked up the moment we had wi-fi off the boat. According to the Merriam-Webster dictionary it is: a tendency to relapse into a previous condition or mode of behavior.
I was still confused…but it began to get a bit clearer that something was up in the following nights. First, there was the sudden invitation to join William and his wife at their table as we wheeled by….despite the fact that we were obviously dining with someone else. The utterly confused look on my face must have been hilarious, but Shannon saved us from that one. Of course we almost ended up sitting beside them at the small comedy club we hit that night (blood hilarious mind you…6000 passenger boat, 90 seat club). We found a back corner to try to be as hidden as possible…which really isn’t possible when you are a 6 foot 2 inch man in a wheelchair. Somehow we managed it. The kicker though took place on the second last night, a formal night in the dining room when William decided to shout a question at me as I was wheeling in on my own to our table…”Say Jason! How long ago was your injury?”
Yes…shouted…across the dining room. I think I pulled off a somewhat incredulous look with a reply dripping with sarcastic scorn…at least that’s how it sounded in my head, “Ummm…years ago?” as I then turned my back and rolled away. Witty eh?
So beside being rude as hell…what was the point? Well it turns out, that there is a thought among some “medical practitioners” with a bit of a religious bent, that certain disabilities can be cured or mitigated if only you embrace attitudes and habits you have that are causing the issue. So in essence: through a combination of prayer and behavioral therapy my partial paralysis might be “cured”. This is what incensed me. While anyone with any disability hopes for a medical cure, be it cancer, Parkinson’s, MS, or spinal damage just to name a few, We don’t need to be treated as if it is out behaviour that is the cause of the problem. Sure our behaviour may have gotten into the problem (see riding a bike without a helmet), but nerve damage isn’t going to be cured by prayer and behavioural modification.
My legs might not work…but dammit there isn’t anything about me that needs to be cured! (As Shan might disagree about my geek factor, but that’s a whole other issue)
Before I get too deep into this rant, I should clarify something. My religious beliefs, or more specifically my lack thereof, are well-known. Both sides of my family know it, Shannon knows it…but they know I respect theirs. Many prayers were made during an after my surgeries on two continents, and I hugely appreciate the good will and best wishes that came from them. The knowledge that so many people cared really did make a difference. But to be blunt…prayer isn’t going to fix my legs. Sorry, but that’s my personal fact I live by. Science will hopefully give me some relief sometime in my lifetime (cough stem cell therapy cough). But I don’t need to be “cured”. I have seen an amazing amount of disabled people who are strong, powerful members of society, who contribute to their families, friends, their work, their lives. They don’t need to be cured of the “recidivism” that supposedly contributes to their disability. They need the support of their loved ones, they need to be treated with dignity (ok that one sometimes gets stretched by best friends) but they need to be treated as just normal human beings.
They aren’t projects. They aren’t something to “cured”. It’s hard to express how much this pissed me off that someone would just pick me out of the blue like this and be so bloody uncouth about it.
We/I have had a life changing event that we are still adjusting to. We hope, that in time something will change in medicine to make things better. But out attitudes, our habits, our lives, don’t need to be cured to fix the problem.
Not sure this rant truly made sense, even though I’ve edited it about five times, so I’ll end with the best quote out of it. It was one of two Matt’s…Kean on the trip with us, or my cousin Kendrick from Texas (sorry guys I can’t remember which) who asked: “What would he have said if you were an amputee?”
Something to think about. And yes, I know full well I could be overreacting and not understanding this recidivism movement…but this experience with it…well…nothing much would change my mind about it now.