We went to the Goose Trail anyway and found out that the gloves which are like mitts, were missing the Velcro to keep the hand tucked in with the hard leather. The velcro had been cut off, also the left thumb was virtually detached. But I was trying to keep a “good spirit” and went out to use the chair anyway, even if I didn’t have the hand strength to keep my hand closed in the “punch” position.
I had been up late the night before looking at the races in the area and I wanted to set a high goal of maybe eight races. There was one in two weeks and if I could convince them to include wheelchairs then I could participate (this is what wheelchair racing series told me on the phone last week).Well, the chair made a grinding noise as the left wheel ground into the frame, Linda could hear it many feet away on her bike and said, “Sheesh.” I tried to compensate by leaning over and away from it. There is a little V bar below the rail to the front tire and it was pushed all the way in to do turns to the right but the chair kept pulling left so hard I spent half the time making adjustment with the large turning bar. Even on a flat straight line there was no way to keep it straight. It was very disappointing but I still did I think about 1.5 km. And worked on doing uphills as well.
It was just one of those things where what you hoped is not what has happened, and no matter how you try to put a happy face on it, it was getting more difficult to do. How could they not know about the chair and the gloves? I mean, for N., who raced on Saturday, did they send him to the races with a similar racing chair?Even Linda felt that she wanted to send it back; she was frustrated with the chair but more frustrated with the association which states as the motto, “The WC Race Series has created an environment that is based on peer support and welcomes all levels of racers from the beginner to the seasoned veteran.” She was frustrated because “They” the racing association, said I have to be part of them to participate in races, and I can only do that using a particular type of chair. But then the chair and equipment they provided at a cost did not work, and on a follow up call today, they didn’t particularly care about that. And that made Linda mad at them for making things more difficult for me, and turning what should have been a good thing into a bad thing. And it irked her sense of professionalism; for an organization that “actively recruits” they don’t nurture the people who want to learn the sport. Several times she asked, “Do these people even LIKE wheelchair racing?” (And you know my motto: You make Linda cry....you die)
I called James the coach and he said that he was driving the group to the ferry. This was a surprise as we had directly asked J. the Wheelchair Race Series coordinator on Saturday if they were going to be there today so we could come back to talk to the them and were told no. This news produced a few “Oohhhh, and I heard you ask them!” from Linda. James wanted to know when I was going to come to Vancouver, as the office is right beside G. Strong, the rehab center for spinal cord injuries. Also, every Thursday night there are “Training” nights but again, only in Vancouver. So with them recruiting from Strong, and going there every week and training in Vancouver, which is a 5 hour trip each way for me, it seemed like a little club, a Vancouver club for people from G. Strong. We wondered if T., who had gone to the Paralympic games had been in Vancouver because I couldn’t see how she could train here without a coach. It turns out she moved to Australia for training. Anyway, James said I should train at the track until I was used to the chair and use duct tape on the gloves.
Since I do most of my training when Linda is at work and the track is five miles away, I sent an email to ask him how one gets there, since the chair is too long to make the corner on the bus. Also, I asked how he managed using his teeth to get strips of duct tape long enough and applied when on his own and his hands are in the gloves. Since this is what I need to do and I could really use some advice in that matter. When he told me that I was to go to a hardware store and get spacers and then take the chair apart and fix the left wheel it felt like fencing all over again. The whole, “Oh, you can’t redo the electrical wiring of your epee blade, I guess you aren’t a real fencer!” I am not particular sorry that I don’t have a dick. Meaning, I joined a SPORT, not a SPORT and HANDYWORK club. Or why is it that when you want to do a sport, the guys get all, “Oh, well if you can’t break down a bicycle from scratch and rebuild it then you probably shouldn’t ride.” Sorry, I mean some guys, and in some sports and this seems one of them. Dicks!
And to put it bluntly, I dealt with Wheelchair Sports (who I called last fall with no call back by the way), because I was told I had to. I want to keep active and do stuff. When I do badminton, they DO provide rackets to beginners and they don’t expect them to go home and restring them or give them ones that cannot be used. If I wanted to learn how to repair wheelchairs, I wouldn’t pay to have them serviced, and to expect someone with limited hand function to, what, do all the breakdown and rebuilding of something they have never seen. Yeah, this sport really welcomes beginners. Plus, I pointed out to James that my next race was in two weeks and I didn’t think the racing chair would be ready by then. He agreed that I should do the race in my day chair. Which sounds a lot like how I did the races before, and didn’t require a rental fee, a membership fee, an insurance fee, several phone calls, emails and hours and hours of waiting. Also, I find the idea of training on a track, going around and around in one direction as training for a 10K on a ROAD race to be strange. So I am going to train on the Goose.
Anyway, in the afternoon I had a very strong attack and could see blue out of one eye and my hands turned blue, my heart barely beat and Linda debated if I had to go back to the hospital. So….five hours later (once I was conscious again) I made a decision. A) Both major attacks (Linda wondered if this was another seizure) occurred after a lot of stress and I am going to keep that at a minimum for things which are non-essential. B) We took the wheel in and had it re-bent and trued and paid for it and tomorrow we are going to the techs to see if they can make this chair usable, and if they can’t….well, the cost of 7 trips to Vancouver for “training” could buy me a brand new racing chair. Or I could just keep doing what I am doing, racing to keep fit in the chair that I have.
I also decided that barring someone actually going out of their way to include me, I have no real interest in joining wheelchair sports. Because I like sports, and I like playing with people who aren’t bigots. And so far, I have yet to find much in the way the organization for BC SCI’s has treated me that isn’t a lot like bigotry. At the track meet they were talking about some of the people had their chair bought for them by the Rick Hansen foundation (available only to SCI’s) or the Power to Be program (available only to SCI’s) and as the Director of Wheelchair Race series said to me, “demyelination of the spine is NOT a spinal injury” (Good news for all those people with MS in wheelchairs then I guess). Well, I fell for it for a weekend and tried to be what I am not; I have a spinal cord injury, even if not recognized by SCI organization, as well as a greater failure of the autonomic function than most or any SCI’s. I am a degenerating neuro and Janet told me that if the SCI people found that out they likely would refuse to give me a classification “until I stabilized” (which for a degenerating neuro is when you get put six feet under). Nice. Well, if I can live with being me as a wheelchair racer, I guess they will learn to live with us lower ranked people with disabilities. Or as a true story told me yesterday, “A quad told someone with CP, ‘I’m so glad you are here, so now I have someone to pick on’” (Since the para’s pick on the quads, and on down.)
Cheery eh. But still, be who I am. And let go have fun and play badminton and do a bit of wheeling when it is fun because until that peer support comes, I see no reason to change my intention of taking judo and hanging and playing sports with people who interest me, which, with the exception of T. and her friend, seem to be those NOT in sports where only wheelchairs are welcome. I DO wheelchair sports, because every sport I do in a wheelchair IS a wheelchair sport; I don't need to segregate myself to be an athlete.



18 comments:
Sorry you were disappointed by the association. Why do you have to be exactly like them to participate? People are different, illnesses affect people differently, disabilities vary (and change through time & circumstance). They recognize the difference in various levels of SCI, why can't they recognize the different levels of ability in people with other conditions?
I think you have made the right decision. You do pretty well being you, Elizabeth. I hope you can get the racer fixed so that it's usable. Training near home seems like a good idea.
And why can't they just mail you some replacement gloves? I mean the ones they provided aren't usable.
I like your motto. No one should be allowed to make Linda cry & get away with it. And yes, try to keep the stress to a minimum. Stress can really affect the body & the brain (not just the mind). Stress can be a big factor in bringing on a Lupus flare -I've experienced that myself. So good - minimize the stress & maximize the enjoyment.
Sharon
Well. Crap.
And what the hell? What is it with disabled people that they can't accept disabilites that aren't going to stabilize? Is it fear? Stigma? Whatever it is, they need to get over it.
But forget that for now. You didn't tell us about your new camelpack. Color? Weight? Comfort? Is it really easy to use?
Yikes! More assholes to deal with! That's absurd that you have to have a specific type of injury! That's probably why they gave you crap to use....what a bunch of morons!
So, there are people who like to do things. Maybe they've been doing this thing alone for a long time; they do it well, they enjoy it, but they do it alone. Then they meet someone else who does it; so they do it together, they make the little adjustments necessary for both of them and they do it well. They meet more people who all want to do this thing and they begin doing it together but now there are lots of adjustments to be made to accomodate everyone's schedules, needs etc and this takes some organizing so the people with the best skills in this area begin making the phone calls and posting the schedules ... and you haven an orgainization. Or a club. Or a group. And if it is successful and things go well the thing ceases to become the activity that started it all and it becomes the club itself. Heaven forbid anyone new wants to come and participate in the thing; how can they? They don't belong to the club.
When we got our current border collie ten years ago we used to take her to the park at night and run her around all the playground equipment; going up and down the teeter totters, climbing ladders, jumping from platform to platform .. Someone told us we should become involved in the dog sport of Agility where dogs do timed obstacle courses. This seemed like a good idea, getting involved with people who are organized to do so. Except the local "club" told us no dog could join who had not gone to a "recognized" obediance course. I don't take my dog to dog trainers. I train my own dogs. I told them, "Put us to any obediance trial you can think of" confident that we could meet all the criteria. I am constantly correcting dogs who have been thru these courses and Hayley is often labelled as the "best behaved dog I've ever seen" No, I had to have a certificate. I saw no point in spending time and money of going thru a course I myself could teach in order to participate in an event that we had already been doing for months anyway. The club could not be budged. This was about the club, not about people excercising their dogs and having fun.
So now, years later, we still go to the park at night and run Hayley thru her very own agility course. We do it by ourselves and we do it well.
Have fun, Elizabeth
F*ckin' A!
The disability world can be cliquish and as you, I've found that I'm happier associating based on what/who I like and shared interests than on ability level.
Sorry you had such a rough education in it.
Good decision to keep the stress levels down. That is extremely important for you.
As for the association... bah! Do it without them. I offer my mechanical abilities as needed (I can repair bicycles) and have an idea on making the gloves usable as well.
Oh, how frustrating. Does the wheel rub when the chair's roller without your in it?j If so, it's defective, and you should let them know immediately - by telephone, collect call. If it doesn't, then they didn't fit it properly and should also know immediately.
Wouldn't a human rights case against the Wheelchair Sports Assoc. look wonderful? You probably shouldn't, but maybe if you mentioned the merest possibility...
They're just so bronze.
Hi Elizabeth,
I hope you dont mind me comenting here, someone said you might be able to help. I've just started using a manual wheelchair and I wondered if you knew anywhere on line I could find info on improving the strength and stamina in my arms so i can be more independantly mobile?
Or why is it that when you want to do a sport, the guys get all, “Oh, well if you can’t break down a bicycle from scratch and rebuild it then you probably shouldn’t ride.”
gargh. I dunno, but it's probably less about -having- a dick than, well, as you say, -being- one. Or some other anatomy part.
from my mercifully limited experience, techie guys are even worse.
and, what they all said. esp. "You do pretty well being you."
That place, it sounds more like a car rental operation than a sports store, somehow.
All together now: Can we have an ARRRRRGGGH!?
Paras pick on the quads pick on people with CP? Whaaaa?
First - this whole association stuff just goes to prove that people in wheelchairs are just people who happen to be in wheelchairs. And that assholes in wheelchairs or otherwise are just assholes.
Second - you look damn good in a racing chair!
Don't let the buggers get you down.
There is always bigotry within groups. Stupid, but there is.
I agree with you -- do what makes YOU happy.
God Beth, what is up with these people? I guess "elite" means awful attitude no matter what body function you may have/lack. Isn't it funny how when you get a group of similar people together they forget how they strugle against the mainstream and they forget themselves to be inclusive?
I've got a pretty good toolbox. I'll fix your chair.
Hi Beth,
Wow! A trip to Japan. That is cool!
It's nice to read you again.
Okay, speaking as a male with SCI, may I just point out that not all of us are like that?
Granted, it took me a couple of years, but I know that a wheelchair is a wheelchair and it's who's in it that counts.
Although an SCI is very easy to figure out placement. If someone has a T3, for instance, you have an idea of his limitations as compared to a T10.
Aside from that, people like you -- joining sports because you want to, and forcing others to accommodate you -- are the groundbreaker's that allow people like me to do stuff. Boxing, badminton, Japan... are all perfect examples.
Raccoon
Sharon MV: I agree, various illnesses are different but if AB people want disabled people to the be the same, I guess once you have a group that is the same, they want the same thing. I took the racer in to some techs but it will be a while before I find out.
They kind of know that the ones they sent aren't usable. Thanks, will try to minimize stress.
Yanub: I don't know about the camelpack, it is black and I left it with the techs who have my chair. I hope I get it back....
Yeah the whole, oh you are unstable thing...put down the scissors - wait, you weren't talking about that 'unstable' but the other one - sorry, bad joke.
Evil Lunch Lady: Well, errrr...I took it to the techs and they said, "Well, we will try to get it running to see if you like racing enough to get a REAL chair" So, I am thinking if they think it is not good...and not a good fit..
Victor: Linda really liked your analogy to your experience, she said that really summed up how she saw things and felt about the experience. It is just sad though when what you hope will be great and with others turns into something else emotionally.
Lene: Well, if you know anything about me, it is that I am a SLOW learner - and I will probably still try to give them another chance, once I am ready to go on my own anyway.
Cheryl: thanks, yes, stress levels and seizures/problems seem to come hand in hand, I am wondering about blood pressure and stuff, dunno.
You are always there, that is so great. I have however left the stuff with three tech guys for a week to see what they can do.
Neil: Oh they know, they told me. And yeah, it is kinda bronze, but hey, we put that on hold for a bit until things can be repaired and ON TO JUDO!
Philomenia: I sent you an email covering some of the stuff - please let me know if it was of use to you.
Belledame222: I don't know it is just it seems odd to run up against that attitude in several sports and not usually/ever the females - though I guess that could happen too. Yeah, now that you mention it - it is like "rent a wreck".
Veralidaine: Oh, you didn't know that - today I was talking to a quad who said that someone in the org wasn't even an SCI they had some other thing and could WALK. I said, That's spina bifida, and I've talked to them. And they were like, "Whatever" - okay, good to see interest in other people with disabilites.
Rachelcreative: thanks, that is true, people in chairs are just people in chairs. And wait until you see the chair rerigged (I hope!!).
Dawn: well, doing what I thought would make other people happy didn't work - why did I do that, I am not actually like 17 am I?
Maggie: thanks for the offer (This will add to your 'butch points') - please don't smack me! And your paragraph really sums it up, the gatekeeping of, we got our group now we can diss on everyone else. Wierd but happens over and over.
Sober: Hey, so glad you are dropping by, how are things with you - yeah, Japan, who knew (well, I did secretly for about six months).
Raccoon: I did try to emphasize the SOME aspect. Yeah, I guess when you life changes in a very quick way and you share conditions with other people it is probably easier to bond than with people who seem to sort of dribble in.
It was odd becuase a quad told me today that regarding racing I should talk to a para becuase quads have "special issues" - and I said, "Like what" and they said, "well, sweating for example." And I said, Well, do you sweat, and they said, 'no, that's what I mean.' And I said, 'And neither do I."
Well, apparently wheelchair racing was told in the 80's they needed to create a catagory system beyond SCI's and they are STILL trying to do it, while all other sports have and moved on.
Well, that sounds like you are giving me a badminton challenge for when I come down to see you. I know, I know, I working on the logistics of it. Thanks though for encouraging me to keep on.
The bad parts of this really do suck, and you have my sympathies, and it's kind of creepy that J. wasn't actually kidding about the bent wheel after all, BUT:
1. It is fantastic to see you out there, doing it.
2. Since I have every expectation that you will be in races, I thought of you immediately when I saw the T-shirt shown at the end of this post:
http://amputeehee.blogspot.com/2008/05/snaps-on-saturday_10.html
heh heh heh
Wow! I'm surprised you actually got a chair period. I've been trying to get into wheelchair racing since 2004 and I'm still no further ahead. I've tried in Nova Scotia, Newfoundland, and again in Ontario but no one will even give me a chance. I had someone in ON call me back, but then never heard from them again, even though I tried to contact them again. Hope it works out for you.
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