Recently I saw a story on the news about a paralyzed dog. Researchers had taken stem cells from his snout and, implanted them into his spinal column. Within weeks he not only regained movement in his hind quarters but he was soon back to walking, running, and wagging his tail.
Stories like this do amaze me. I think research in this area is vital and clearly, there have been promising results. I believe in the not too distant future paralysis will be reverseable. I’m advocate for any medical advancement that can improve quality of life.
Still, something has always bothered me about these searches for “cures”, especially in regard to physical disability. In my short time writing this blog I have tried to convey the idea that I think each disabled person has a degree of control over how others perceive them and, their disability.
I think sometimes these campaigns for “the cure” can reinforce society’s negative view of disability. I think sometimes it sends the message that, if you end up in a chair, the only real way forward is to find a way back out of it.
I don’t have an acquired disability. I wasn’t in an accident. My situation was from birth and because it’s brain related I’ve always known there is no cure. There’s a certain peace in that. I didn’t have to watch telethons year after year hoping this year would be the one. I haven’t lived my life focused on “the day I walk again”. I just got on with what was.
Now, I’m not bashing anyone for having hope. I don’t love being disabled but, nor am I aching to be “fixed.” I have had people try and say it’s different because I’ve always been disabled and that having ability taken away is harder. I see their point but…I challenge it. I may never have walked independently but…I grew up in a world that did. A world that still reminds me all too often how different I am. I DID have something snatched from me. The only difference was that robbery occurred with those first few breaths I DIDN’T draw. My point is, I needn’t have walked to know what I’ve missed and it goes far beyond just putting one foot in front of the next .
I just think society could use more examples of “Yes this happened to me, and sure it’s tough but…im ok”. I think there is too much focus on getting back to what was and not enough examples of embracing what is. Society picks up on these kinds of things and builds ideas around them.
I don’t really have any disabled role models. However I do see many people who because of a disability have had whole new worlds open up to them.I’ve seen people become things they may never have if there life hadn’t veered so dramatically. I guess I’d like to hear more of that then “I will walk again”
Do I believe in prevention? Without question. My objection isn’t with finding that cure or making sure others avoid such hardships. I just really object to the lingering idea that being fixed should be the goal.
I think about walking, sure I do. However again, walking is just one aspect. I think it would be just as jarring and strange to suddenly be entirely able as it must be to suddenly be less.
I think Michael J. Fox for me, is the only person I’ve seen strike the right chord in his message. Yes he’s out there promoting research, lobbying, funding. However he’s not doing it for him nor has his said his condition was the worst thing to happen to him. A guy like that, a message like that is what the world needs to see more of. He’s there to do as much as possible to see that others escape his fate. I get that and I applaud that. He’s also said that his condition really opened him up as a person, changed his priorities and his vision of what life is about.
My point here is, nobody LIKES being disabled. Show us the Lazarus dog if need be as a testament to whats possible….maybe. However this attitude that the only version of yourself that’s valid is the one that was 100% able, has got to go.
As I’ve expressed before, I don’t have a clear vision for this blog yet.This accounts for the sporadic nature of my posts. I write when moved to, rather than having some grander plan or sense of where this is going. I think of it as a great window onto my life and in some ways, a record of how I think, and feel about certain things. I have a book of hand written editorials of my Father’s that serve the same purpose. The topics are major and range from History to religion, and war. Those essays are HIS thoughts, and in them, I hear his voice. I think I could hand those papers to ANYONE and they’d come away with a sense of who he was and, how he thought.
I think a blog is the evolution of that binder. Yes some blogs are updated more often, or are focused on something more specific but…it’s all about recording and relating. I never set out for this blog to discuss my disability so much. I understand my physical situation is undeniable and would of course, come through. However in reading my entries back, even I’m shocked at how much of a central issue it is.
Intellectually, I have always liked to think of my disability as merely a set of fixed circumstances which effects my life but does not define it. That’s a great line and ideal but….is it true? My answer at this point can only be…I don’t know.
Reading through my posts here it becomes clear that each time I am frustrated, annoyed, hurt, or let down enough to write, it usually comes back to my disability. This is a hard realization for the guy who has tried to steer clear of being another “angry guy in a wheelchair.”
I do have a full, fun and rewarding life. I hope THAT comes through just as much as the other aspects. I’m not terribly disgruntled, (well, today anyway) and many of my days are great and, most of my interactions with people go quiet nicely.
However, if I think of this blog as a unique record of MY singular experience in life, than ya….you’re gonna hear the stupid bits and the shitty parts. I can only say, that’s only half my story.
If you know me then you know this, and, I’m sure you hear me. If you don’t know me but have just taken to reading this, then I thank you. I’m still awed that these writings impact anyone really. I promise it won’t all be rants and tyrads and I’ll figure out the point as I go…maybe?
i’ll warn you know though my next piece is probably going to be about why so many people in wheelchairs are desperate to be cured. This topic has been in me for a while but recently, a paralyzed dog was shown on the news walking again. I’ll explain later why this pissed me off…if I still have an interested audience that is!
There are parts of my life that are hard to explain or relate to unless, you’ve lived the same. My experiences of death and loss would be among those. Because until high school my peer group was entirely made up of disabled kids, death was never really far. I understood and saw on a daily basis what a wide and awful spectrum this thing called disability could be. I’ll never forget being 10 years old and going in to school one day to find the desk next to mine vacant. Imran sat there. He was a bright cheerful kid with Muscular Dystrophy. I still vividly recall his face and smile.
I hadn’t immediately thought much of the absence next to me. However when the clock hit 9:00 a.m. and class started, everything changed. Imran had died unexpectedly overnight. With those words, in that moment, life would never be the same. Death became real to me. It was no longer just something I intellectually understood. I felt it, and it hurt.
Imran’s was the first funeral I ever went to. I didn’t really know then how routine this would all become. School went on, life went on. Sometimes I’d stop and realize how many of my friends had the same condition. Sometimes the loss was in your class sometimes it was two classes down but…you felt it.
I had a lot of friends with M.D. . I never really asked them how they felt when this would happen. I think I knew they were still trying to process this life they had ahead of them. We all just sort of kept going. I never hesitated to befriend a kid with M.D., I didn’t think like that. Even in the course of these many friendships, I never thought…”you’re are going to die.” Even when I knew all to well what was ahead…I was very focused on the friendships.
It got harder as we got older. The deaths came more often and hit closer. No longer was it guys I sort of knew, or just played hockey with, or were a few years older than I. MY crew began to be hit. I hated it because I knew what it meant. It wasn’t that I’d been super close with each of these guys. We’d had fights, There were even guys I just plan didn’t like but….we’d all grown up together. Differences or not we were all so closely intertwined that I felt each loss.
My best friend was named Stephen Desi. We’d been friends since I was about 10. Stephen was different than me. He’d gone to a regular school, he had been able to walk. Muscular Dystrophy had set in and changed things and so…Steph came to my school. His was a friendship hard earned. I was facinated by Stephen he knew things I had no clue about. It was once said by my favourite teacher that our friendship worked because we were the two sides of one coin. I liked that image, still do.
My friendship with Stephen is a huge part of my maturing. He is part of the fabric of almost, my entire life. He was either the driving force behind, or my partner in every adventure. We had victories, we made mistakes, we took massive wrong turns but always found our way. I laugh now when people say I’m outgoing. I know without Stephen behind me I would have remained a lot more sheltered.
I loved Stephen. As the years went on, and fewer of our crew were left….I knew. I understood that really it was a matter of time. I’d watched the progression. I knew, and Steph knew where he was at in the big picture of things. Still, he seemed like he’d beat the odds. Truthfully, he had a few times. This larger than life character who out did everybody wasn’t going anywhere…I thought…or hoped.
Then on Sept 19 2011, the day I had wished away forever, arrived. With a simple message on a computer screen, my life seemed empty. It took me literally 20 minutes to even start to comprehend what this meant. I just sat there looking at words on a screen. THIS was the loss that was too much, the one that really broke me.
It’s a been a year and I still feel it freshly. Nothing has subsided, I have not made peace with it. I miss my friend. I miss having a guy that I could look at and know he knows me. I miss the history and I hate that it is relegated to stories now. Because of Stephen, I have come to see how much I value that sense of history. I think I miss all the people I’ve lost more now because I know…they represent something that can’t be explained. It’s a history, it’s “remember when?”. This kind of thing is usually, hopefully reserved for old age. A longing, looking back. Sadly I and many like me know this territory well.
I love my friends now, but they are all very recent. There are few left that I go way back with. In the last years of his life. Steph withdrew from me, from a lot of people. I didn’t like this but I was no stranger to the fact that he dealt with and processed things in ways I sometimes didn’t understand.
I missed him yes. However sitting here today I might wish for a different ending but, I don’t regret what is. I know Stephen was my friend. I have all the stories and laughs to prove it. Endings are just endings, they don’t always sum up what was.
I ache for my friend, and I ache for what was. I am reminded of him daily in so many ways. If you know me well, then you know his name. I don’t speak of him like he’s gone. I am beyond grateful for everything Steph gave and taught me. I’m not religious so I’m not sure if I believe in the idea of heaven. I do know, Stephen is very alive in my memory and heart, and those of a great many others.
You left a undeniable mark on so many Stephen, a feat that is not to be diminished. Yours was a life well lived!
So, the Paralympics are in full swing. They are enjoying a higher public profile than ever before too. I have, just as a casual observer, been pleased to see media give the games their due. However, despite living with a disability myself, my interest ends at a casual glance at a headline or quick highlight.
Many think that if you are disabled, these games are in some way yours. There is the idea that we identify and that those athletes and their achievements, speak both to, and for us all. This line of thinking could not be less true in my case.
Like any observer, I admire the achievement, the training, and so on. However as I watched the opening ceremonies, I so wanted to feel a kinship to these people but it never came. To a large extent I identify with the Paralympic athletes about as much as I did with any person in the Olympics.
Rather than feeling connected in some way, I was transported back to when I was fourteen. I was desperate to figure out where I fit in. I remember going to Variety Village, this wonderful training and recreation centre for disabled and able bodied alike. I saw the track, I saw the courts,I saw wheelchairs all around. I remember thinking, “maybe I fit here too.”
While I had some fun and had some enriching experiences there, I soon knew this was not my realm either. I have Cerebral Palsy. At that time in my life I was still in a manual wheelchair. I tried racing but…I was never able to get in a proper racing chair because my legs would not bend to that degree. I tried basketball but I’d flinch when the ball was passed quickly and had trouble co ordinating to catch and shoot.
All around me where these more able guys. They were everything I wanted my version of disabled to be. The had strong sculpted shoulders, they sat in tiny light weight chairs with low backs and nothing more than a small cushion. They could transfer in and out of the chairs at will independently. Their co ordination was perfect, to my eyes the only thing they couldn’t do was walk. That’s a sentiment that gets thrown around a lot when people want to give voice to the ability inherent in a person with a disability. That’s not how I mean it in this case. I mean these guys could literally do everything BUT walk.
There were people closer to my level of disability but few.I hung in for a few years and took part in different programs. I hoped I’d find something that I could really do. However as things changed for me and it became clear a powerchair was my future, there was even less there for me. I wasn’t alone in this. My best friend Stephen had tried his hand too. He had muscular dystrophy and while initially he was very good at a lot of the sports, he too soon had to face the same reality.
For a time, I really thought there was no sport that was either for me or that I’d be good at. It was so frustrating. This was the time following Rick Hansen’s wheel round the world, and things like wheelchair basketball and names like Jeff adams were becoming synonamous with “disabled sport.”
I hated having CP. I hated not looking like those guys. I hated my body that wouldn’t work so fluidly and…I hated my power chair. Alot of that came back to me watching those opening ceremonies. I think the Paralympics are a great thing. However they are not as inclusive as the ideology would suggest. I know from first hand experience that their are a great number of gifted, strong, competitive athletes with physical disabilites who do not figure into the Paralympic model or movement.
My day may have passed but, I want to see more people like me and the crew I grew up with represented in these things. I think the Paralympics can do even more to showcase a more complete picture of what it REALLY means to be …a disabled athlete. I will in a future post be writing about my involvement in Power wheelchair floor hockey. It is a great sport which should enjoy a much greater profile, especially in this country.
I again wish to make clear, this piece is not meant to detract from the Paralympics nor it’s participants. I just wish more of us had a place in them.
One of the things I dislike most about my life is that often I lack the options that so many others enjoy. I survive on funds supplied to me monthly by the Ontario Disability Support Program. Some are under the impression that this is a large amount. In my case, it is not. I don’t like being on this kind of support nor having such limited resources. However the reasons behind my situation are complex and not all within my control. Suffice to say, there are many capable willing disabled people who feel stuck on the system. Unless you are highly qualified and can land a job that will make you over $50,00 a year, when you crunch the numbers you’re actually better off staying on support. I’d love to work. However if I got a job tomorrow making $20,000 a year I’d lose my rent subsidy, and pay $1,000/mo rent, any wheelchair repair cost would fall to me and so on. So you see, unless you’re sure you can land a good job, you’re better off staying on the system so you get coverage. It’s awful.
It’s no longer just a matter of applying myself either. I have long thought about going back to school to finish a degree and thereby put myself into consideration for jobs that pay more. However my back and daily fatigue factor and organizational issues make full time school impossible. That means a four year degree turns into an 8 year project. yes maybe it’s worth doing, but if the goal is employment and I’m 37, 8 years is a daunting number.
What bothers me most is the Government knows that so many disabled people feel stuck. They know the system is flawed. They know that many of us aren’t in a position to get high paying jobs and would still need help even if we got entry level work. It’s so frustrating to want to work, earn, contribute but to know the system is more about clawing back, than helping you.
I’m 37 and I have no assets, I’m not even allowed to have savings and even if I were, where would they come from? I just went on my first mini vacation in 7 years and that only came to be because a friend helped. I don’t feel 37, I feel about 18 financially.
It’s a joke. The system, the government, the formula for this support, it’s all wrong. Something like 50% of all those living with a disability live at or below the poverty line, even those on support. I’m bored of wanting to work but yet being afraid to earn because it won’t be enough and I’ll be off the system. Wake up politicians! Put some substance behind your words and some reality in your policies. Enable and enrich us rather than inhibit and preclude us!
I have not written in quite awhile, and for that I can only apologize. As I’ve mentioned before, this blog was started on a whim. I’d love to say I have some grand vision of all that I wish to use it to impart. I wish I could say I had a theme or even a goal for this blog, I don’t. For now it’s just a place for me to write and to practice this art I so often neglect.
I wish to thank all of you who have read my work. I have been amazed by the comments I have received both online and in person. It is very rewarding to actually see this reach people and to generate any reaction. I promise you all, I have lots to say, it just may come in great flurries and then droughts. Stay with me though, I’m better motivated if I think people care, and are paying attention…how’s that for honesty?
Part of why I drifted from this blog for a bit was, I worried it was becoming a “disability rant” kind of thing. I intellectually understand my disability impacts my every day. I know there is no eluding it, but I’m mindful of not letting it be all I talk about.
I have a lot coming up that promises to lead to great material. I WILL be writing more so…stick with me and keep the feedback coming!
Thank you!
Life in a wheelchair in many ways means surrendering a degree of control. This is clear on many different levels and situations in daily life. I had a situation come up that reminded me how fragile my sense of independence and control can be.
I’d stayed in Friday night, to nurse a slight cold. By Saturday evening I was feeling much better and decided to step out. I made the usual rounds, saw a band, and ran into friends. If I’d headed home afterward as I usually do, perhaps the following events would have been avoided, perhaps not.
At the invite of a friend I decided to go by his place afterward for a bit and hang out. I get invited a lot of places after last call, many of which I decline due to inaccessibility etc. This time though, despite initial hesitation I said yes. My friend and I arrive at his place. Immediately I become aware that perhaps my hesitation was well founded. As his front door opens I am greeted by a daunting staircase. I quickly say, “you’ll never get me up there, it’s ok…I’ll just head home.” This of course is rebuffed and I’m assured he’ll manage.
Now, at this point I’m of two minds. There’s the sensible argument of the staircase and my situation. On the other hand, I know from experience that saying yes in some of these situations has lead to me having great times I’d have missed if I let the chair rule. I never make this choices on a whim, nor put myself in danger but…I weigh BOTH sides equally.
I leave my chair downstairs at the front landing and am carried upstairs to a waiting couch. Music is played, beers had, all is well. I think to myself this is another thing I would have missed if let my situation rule me. I sit there, glad I came…even if, out of my chair I need more help than usual.
I keep an eye on the clock even as I’m enjoying myself. Around 5:00 a.m. I say I should get going. Despite offers to crash out there, I know it’ll be best for me to get home. We carefully descend down that same staircase and I’m placed in my chair. After time on a couch, my seat feels so good to my back.
I settle in and flick the switch to turn on my chair. Nothing happens! I try again….still NOTHING. I don’t immediately panic. I’ve been through a lot with my chairs. I know it could be a loose connector or something very simple. We try everything I know to try, still no power. I flick the switch repeatedly with no response.
Now my brain goes into option mode. Do I spend more time trying to get it going or, do I think of options to get home? Given that the chair is giving me no signs of life, I decide home has to be the focus. It’s just after 5:00 a.m. on a Sunday morning. Wheel trans is not an option to me for reasons I won’t go into, but even if they had been there’d be no guarantee. Wheelchair cabs mainly cover Wheel Trans overflow and are rarely available last minute, let alone at that hour.
I’m not far from home but…too far to be pushed. I settle on calling the police as my option. I did this NOT because I thought they could get me home but….thinking they might have sway with wheel trans or a cab company. At this point, I’m outside with my friend in the cold. Going back inside and upstairs is not an option.
Not long after the call the cops roll up. I explain the situation and though sympathetic, they are unsure what to do. They suggest all the options I’ve already been over in my head. In the end, they call a cab company who says it’ll be four hours until they get to me. Unable to offer any other option the cops depart.
I now start thinking the key is to try and get the chair going, knowing that if not, at least there IS a cab coming. I’m, tired, my friend is tired, it’s cold. Talk turns to how this was a bad idea, the worst night ever etc. I offer the opposite and explain….things happen.
I have had things happen before. I never really panic, I just immediately process the options. I’m very much optimistic in my approach to these things. I think if I worried about what could happen or might happen I’d never go anywhere. I’ve never not made it home, and I always keep that in the back of my mind.
In this time I’ve been on the phone with everyone from other friends, family and a 24 hr service tech. I know even if he comes, unless its a minor issue like a loose plug, there won’t be much he can do on the road. The other reality is, I don’t have the $100 fee just for him to attend. I decide again some help is better than none, and ask him to come out, we can sort out the fee later.
With help on the way, and a ride coming at 9:30 a.m. we look for places we can get inside out of the cold. Starbucks has a step and isn’t fully open yet. My friend pushes me into an ATM lobby and we…wait. I’d been trying the power switch the whole time periodically with no luck. After a little while I tried again and everything came on! I don’t know what was wrong, nor what changed but….I wasn’t about to waste a moment! I took off home without delay!
As ever, I made it home. There were many moments of doubt and concern yes, but…I made it. I’m again amazed at how few real options there are in such situations. Wheel trans only begins service at 5:00a.m, the service guy isn’t equipped to transport me, and a cab was a four hour wait. In the end, a bit of luck turns out to be my best option.
It’s a lesson re learned really. I will be sure to pay my Wheel trans dues so that they are again available to me. I’m just shocked at how really, no one else is prepared in such situations. Shame on Toronto. In other cities I’ve been to, over half the cab fleets are accessible vans that can be flagged down at will!
