Disability Time

When I go to ultrasound, I have to prepare to lose three hours of my day. The actual appointment is about 20 minutes, but when you involve WheelTrans, the parallel accessible transit system in Toronto, you need extra flexibility. Lately, they seem to have engaged in some sort of internal competition about just how much they can mess with my day. Last week, I got to my appointment an hour before I had to be there, but yesterday? Let me tell you about yesterday.

I called the morning before, requested for a ride to arrive about 5 min. before my 11:30am appointment. I get a ride with a pickup between 9:50 and 10:20 -several years ago, they created the concept of a pickup window of half an hour, which allows them to accommodate more riders, so in theory, it's good. In practice, it's kind of aggravating. My estimated time of arrival yesterday was 10:20am. An hour before I'd asked I have to be there. The way it actually worked out yesterday morning was that they picked me up at 9:50 and I arrived at 10. It's a 5 min. ride and I take it because walking both ways would put more strain on my shoulder…

By the way? When I talk about 'walking,' I use a metaphorical sense of the term. I perambulator by pushing the joystick on my power chair and don't actually walk, but substituting 'roll' is just too agonizing. Just wanted to clarify that. I once got a comment from someone who was supposedly a WheelTrans driver asking why, since I could walk, I didn't get off the service so someone who really needed it could get a ride. Sigh. Oh ye of  little imaginations…

So there I am, sitting in the waiting room a full hour and half before my appointment and although I had a book, I was annoyed, so instead I started thinking about Disability Time. You don't find it mentioned much in Google in the way it’s used in the disability world, but maybe some day, it’ll make its way into search engines. Disability Time refers to the way in which most things take much longer when you have a disability. There is personal Disability Time, as in it probably takes me double the time to make a cup of hot water in the microwave that it would you and then there is the Disability Time that's imposed by others and there are a couple of those. There is the Collateral Damage version, an accidental consequence such as the three hours out of my day if I have to get a return ride from WheelTrans to a clinic that’s a 5 minute drive away (which given the season is probably imminent). And then there's the Bureaucratic Disability Time in which a huge lag time is built into a bureaucratic process. For instance, if you are on ODSP - the social assistance for people with disabilities in the province of Ontario - and your wheelchair needs repair, you need to get a quote to give to your worker, who will then get the quote approved and by the time you get your repair, it's a week later. Seriously. What happens to your life in the meantime? Well, nothing really. But since you're on ODSP it's not like you actually have a life, right?

Being a person with a disability is a full-time job. Many of the requirements of this job are related to the ability to sit around and wait without losing your sanity. 

Did I mention patience isn't my strong suit?


Crafty Cripple said…
Ah yes, we have similar problems with hospital appointments.  They have an ambulance service in the UK which  you get to use to get to hospital appointments if you are disabled.  However after using this service just once and spending about a week recovering in screaming pain from the process, I decided to go by taxi there and back.  More money spent from my disability allowance, but I spend less time in agony, and to be honest the money is meant to be for transport. 

I am fortunate that I am mobile enough that I don't need a wheelchair full time.  Its bad enough when you are able to get out of the chair, I cannot imagine how hard it is if you are permanently seated.
Anonymous said…
I used to be back-up support, when she would let me, for a friend in a chair who used the local version of that transport service. They were awful. She would be taken two hours early or they would simply not even show, or...!  Disability Time is a reality that the able-bodied don't see.
Anonymous said…
(Wait--how did that put me as guest?)

Annette said…
We hired a very pleasant person who uses Wheel Trans and she had to quit.  The Wheels Trans drivers don't like being given directions for one thing, so they had trouble finding us, and also she couldn't count on when she would arrive.  One Saturday they just didn't come to get her.

About the same thing happened to the other person we hired before her - it was partly Wheel Trans in her case

Anonymous said…
I remember when we went to the ROM and after our visit, we stood outside, waiting at least an hour for your pick-up.
I don't really know the costs, but I do wonder if it wouldn't be better, for both users and the TTC budget, if they just operated more like a taxi service.  I mean, I'm sure the TTC would manage to screw things up and have it cost triple, but I really wonder what the point of the elaborate booking procedures are, if they have little meaning in reality.
I've known a few people who have celebrated when they turn 65 and are no longer on ODSP.  They usually end up with a slightly smaller monthly payment, and have to start paying out of pocket for things like glasses and dentists, but it's such a relief to escape the bureaucracy.
Trevor said…
Hrmm... I was labelled as a guest as well.  If this post doesn't work - it's Trevor.  It would appear that your comment provider has ditched their internal logins and is now forcing people to login with their ID from other sites like Gmail and Twitter.  Don't know if they warned you about that.
Anonymous said…
Of course not, because that'd mean they were a quality service who listened to their customers. Am still trying to figure out a solution to the problem without losing 5 years of comments. Sigh.
Guest. said…
I love how you can't make the short trip yourself because of the hardship placed upon you when you have to use the joystick on your powerchair.  That's like me saying it takes too long to walk their so I have to jog which is harder so you should give me a free ride.  It is pathetic.

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