this was originally posted to my main blog on May 19th, 2022.
I’ve watched many Day in the Life, A Day Wheelchair Challange, and other similarity-themed YouTube videos. Not a single one of them touches on how sore, painful, and hard it is to use a wheelchair that isn’t actually built for your specific frame/person. All the people who have done the challenge who were not disabled only talked about the challenges that they experience, not a single video talked about the after-effects of using the chair for however many hours, or how they felt physically afterward. I know such experience likely wasn’t filmed or if it was it was cut out of the experience as not being relevant to what the author was trying to show.
Which I do understand, but as a new chair user it would have been something that would have been helpful to hear about from others’ personal experiences and the like. I knew that I would be sore afterward, but I wasn’t expecting it to be at this level of discomfort and pain, not to mention fatigue.
Not a single video expressed how hard it is to push yourself along uneven pavement/ground, or how to keep yourself from running into the road on said uneven pavement – this is something that I have trying to figure out how to do and the strength it takes to just keep the chair rolling straight without it rolling into the road or the grass is more consistent strength then I actually was expecting it to take out of me.
Then take in the countdowns for the traffic lights, OMG that was very frustrating as I would start out as soon as the hand-turned in my favor to start rolling, and before I was even halfway across the countdown would be almost over leaving me still crossing when it changed! That was super frustrating, to say the least – big time since it was on a very busy street (Finch Ave). Add in that the road surfaces were very uneven and caught my front casters more than once almost tipping me out of my chair didn’t help matters.
Now I have used my chair for a few hours here and a few hours there, but Wednesday, May 18th, 2022 was my first actual day of using it fully outside in public, and I mean more than going to the mall or similar easy rolling surfaces. I had to get to my podiatrist appointment something that I normally would drive to, but since I currently don’t have a working vehicle and I’ve no timeline as to when I still have one, I did what needed to be done and took my chair out for a full spin.
Now I have taken my chair out and about here and there since I got it, but this was my first time having to navigate the Toronto Transit Commission (TTC) system and I was very much NOT prepared for how hard it really would be to navigate it and this is despite watching a few YouTube videos of other wheelchair users telling their experience, their voices didn’t even come close to giving me the breakdown or the truth for how hard it actually is to navigate. It was a very good thing that I had actually left an hour earlier than what the TTC App was telling me that I needed to leave by because if I’d left according to it I would have arrived long after my appointment time and gone all that way for nothing (as they would have canceled the appointment).
Despite putting into the APP that I was a wheelchair user all distances were measured with times for able-bodied people and how fast they can walk on the uneven pavement not to mention it didn’t flag the fact that on my route there were 3 elevators that were out of order meaning extra time to navigate the system just to get down to the next train or up to the surface (something which an able-bodied person wouldn’t have had to worry about – unless they had a stroller to worry about).
I’m thankful for the staff who actually took time to lead me to the alternative exits and who even apologized about the APP not being accurate thus making my travels harder than they should have been. It was nice that they did that, but come on TTC it isn’t up to your employees to say that they are sorry it is up to you as a company to make sure your applications that riders will be using reflect the options open to a traveler. The small disclaimer at the top of the app at the beginning that the route might not reflect current conditions, isn’t helpful at all since it gives me as a disabled user 0 help in what obstacles I might run into in my travels.
I’m also thankful to the bus drivers who actually made sure that I was able to get onto the bus instead of just stopping to let the able-bodied people on and telling me that I was out of luck until the next bus came, etc. So maybe my complaints did help or matter, I don’t know but not a single driver pulled that on me and there was one that I was actually expecting to happen as the bus was very full (packed actually). I was 100% ready for the driver to say that they couldn’t let me on for safety reasons or such (as in there might already have been a chair user don’t here so in truth, not enough space for another user to board).
But that didn’t happen the driver actually told the people in the three seats and everyone standing to get off the bus because I had to get on. I was so embarrassed, to say the least, that she did that. I know the AODA states that as a wheelchair user I get priority seating on the bus, but at the same time, it was shocking that the driver actually got out of her area and made sure people got off and that the way was clear for me to get on.
I thanked her when I was getting off, and she said “not a problem, that is what we are here for. Have a wonderful day” to which I replied that I hoped the rest of her shift went well without issue and rolled off. I am happy that I was able to make the trip to and from my medical appointment on my own without Norman having to go with me, it was a good feeling to do it on my own – but at the same time, I was really missing having him to help push me when I got tired and my pain levels skyrocketed.
I also have to mention that I had Storm with me during all this. This was her very first full outing with me in my chair. She has of course worked around my chair and I have made sure that she is comfortable working around it. But this was her very first time loading onto the bus with my chair she has never before used the wheelchair ramp to get onto the bus. But she handled it like a champ/pro. To watch her you would have thought that she had hours of training to do it and experience. The compliments I heard while riding the bus regarding her was a little surprising. I overheard more than one person point out to something that she was a working dog and a very well and highly trained one at that.
That was kind of strange that some would comment that they thought she was highly trained, well trained that is something I am used to hearing – but the whole highly trained combined with the well trained is a new one that I’ve never heard before. To me, the majority of service dogs are highly trained, granted there are those that need extra work and refinement – but for the most part, all are highly trained to work with their handler and to their specific function in general.
One thing I found with Storm is that she actually wanted to get out and go to work, of late she hasn’t been overly interested in going to work, but for whatever reason, she was chomping at the bit to get to going and work. And she got a good amount of exercise in that she hasn’t gotten in quote sometimes – according to my Fitbit, I took over 20k worth of steps (that’s how much I was using my arms to push myself in my chair). Something that in truth I wasn’t really thinking about when I set out for the day, but it is interesting to see how much it interpreted my pushing to equal in steps. Guess they are right that pushing yourself in a manual chair is equivalent to at least twice the amount of effort as generally walking will take.
The last leg of the trip home is where I got caught up, when it came time to get on the last bus home, this is where I learned a lesson that had me almost in tears. I learned that despite the entrances being accessible in some regards, not all actually are truly accessible – in that they are unattended and quire you to use a Presto Card/Ticket to enter, and though yes they had the presto machines that you can buy a single fiar from – those machines don’t always work.
I actually LOST money to one machine and when I called the number of the machine the bloke on the other than was sorry about my loss of cash but that there was NOTHING that he could do about the loss of cash. Now I am lucky that I had more change on me, but as tight as my travel budget is that extra use means one less trip that I am able to do this month because I now no longer have the funds to do so.
So I can take the bus to go get my medication but I am unable to afford to take the bus back home again, meaning I have to navigate my way along an unsafe street back home after picking up my medication (or have to do it in reverse, roll there and take the bus back home – which I am more inclined to actually do). Getting to my dentist appointment is still possible I still have the cash to get down and back. But that’s it for the month, we won’t be going anywhere else unless it is 100% necessary because I have enough for one more round trip for one person.
Now I do need to get a presto card, and I know that there is a reduced fair fee for those who are low income, but I’m not 100% how to access it as yet. So that is my next thing to look into to see what I need to do to make that happen (though from my understanding it isn’t a big saving, right now any savings is just that savings). There is also a caretaker package that I can sign up for to have whoever comes with me ride for free, which means Norman wouldn’t have to pay for their fair if going with me which would help us both great for traveling, but again it is something that I have to look into to learn more about.
I still need to get my new GP to do the paperwork for Wheeltrans, but seeing how dismissive she is of my medical and the fact that they charge 25.00 per page to fill out I am unsure if I can even afford to have her fill it out since it will be over 100.00 to do so and that’s a steep price since in September they will be introducing the family fees where we can pay a single fee and have as may scripts filled out or letters/notes/paperwork filled out as is needed. Sighs so likely going to have to wait until September to get anything regarding Wheeltans put into place because of their existing policy being uneconomical for us right now.
So overall it was a good experience, but one that I am not looking forwards to having to do again any time soon, because well I’m tired and sore after this one and I know I am going to be more sore and stiff in short order because of overusing my muscles – but at least I can say that for all the system has its problems overall it is workable to getting around if you don’t have access to Wheeltrans, or even if you do and the system isn’t going to be a workable option for you to travel.
Post more as time does happen, take care, everyone!
