So, as time goes on and on, I’m discovering more and more how the world is totally NOT adapted to wheelchair users, and that I can’t last much longer with a manual chair, with my upper body also affected by my conditions. It’s hard enough finding the physical strength to push myself, but my shoulder joints in particular are not feeling good, acromio-claviculars (where the collar bone joins the shoulder). I’ve been holding off on steroid injections in my shoulders until I’m desperate, but propelling myself in a manual chair is not exactly beneficial for the poor things.
A few weeks ago when I went for the interview for the RNIB position was the first day I had a proper day out alone with the chair. Usually I have my twin sister there to push me, although I’ll go around on my own in the shops or sometimes I manage around town while I’m waiting for her to get off work, for example. This trip was all on my very own from start to finish, so I was quite nervous how well I’d manage. Luckily, I can walk with my sticks, but obviously it’s not easy to push the wheelchair from standing and use the sticks at the same time, but I did manage just pushing, seeing as (funnily enough) my hospital is up a hill that I could never propel myself up. I managed the bus journeys fine on my own–I folded up the chair and sat in a seat, first to give my poor bum a break and also to sit facing forward on the journey. Traveling backwards is fine for local buses, but not for a whole journey to another town, even without my nausea. The biggest problem with the buses is the pole they have beside the wheelchair berth; it makes it very difficult to maneuver in and out of the space and I often get myself somewhat stuck.
The big mistake I made that day was getting the local bus into town and overdoing things. First of all, I made the journey backwards, and oh, of course, my nausea was so so bad that I spent the whole journey screwing up my face to hold back from throwing up. Lovely! Getting around town wasn’t too bad; I went to the mall to get myself a Subway and to have a look for some Christmas gifts (I know, I want to pretend it’s not happening, but I’d be ecstatic this year if I actually manage to get the few gifts I’m buying sorted well in advance for once!). In Subway it’s always quite tight spaces, even without a chair, not only in between the tables but going around the queue as the standing space is bordered by tables on one side and then the toilets at a very tight corner. Not exactly intelligent design. I got my chair round and when they asked if I would be sitting in, I joked “If I can find a table!” I did hear one of the workers asking another if there was a particular table free as she had a customer in a wheelchair waiting, but I never heard anything after that, so I actually ended up sitting just outside the restaurant area in my chair and called my sister to chat until someone close by finished up and I managed to get a table at a more spacious area.
The mall was generally good, nice smooth floors and elevators as you’d expected. The only issue was some fairly steep gradients; gradients in grounds and floors don’t seem much at all until you’re rolling up or down them, let me tell you! The slightest incline in a pavement can make it virtually impossible for me to keep in control of the chair. One in particular was a challenge to get up, and partway up a child stepped in front of me; I had to keep going or I’d be rolling back down! (Obviously he got out of my way. :P) As for going down inclines, I thought a few times I’d end up on the heels of people in front of me, so I often waited for a bit of free space. Just little things like that you don’t consider would be a problem, and maybe they’re not for many manual wheelchair users with good upper body strength, but they were exhausting for me.
When I was getting the bus back to the hospital in order to catch the bus back home was when things really went to pot! A guy I’d got talking to in one of the shops ended up bumping into me at the bus stop and before long we were chatting again like old friends, which was nice. What wasn’t so nice was him telling me to get a particular bus and others at the bus stop agreeing it would get me back to the hospital. First, I missed the one that came because there was already a wheelchair on it–a third guy came along and had to be turned away too, so he and I had a bit of a moan about it. It’s frustrating that buses will only carry one wheelchair. There must be people who go out with other people in chairs–then they must take extra buses? As the guy was saying to me, they could make at least another wheelchair space, especially as there’s often extra space for buggies which could go into a designated wheelchair space.
Anyway, when I finally got on the next one, I got settled in and then the fare man came to sell the tickets. I asked for the hospital and he just said, “You’re on the wrong bus, mate.” I was like “Are you serious?!”, explaining people had told me this one! He was really helpful and got me off at the next stop and gave me directions to the bus stop I needed. Unfortunately it was up a hill. I could not manage at all and had to push my chair up the hill again. Then when I got the chair onto the bus, I was still standing when the driver started driving and so I went flying! On top of that, when we got to the hospital, I had to wait ages and knock on the driver’s booth to get him to get the ramp because, in his words, “I forgot you were on board, pal”. Charming!!! I should mention that this whole incident with the buses was even more stressful because my sister had told me the last bus home was at 16.10 (which it wasn’t, by the way!).
The same trip to Dundee this week was not as bad because I didn’t go into town, but the bus home did break down, so we had to get onto another one on the motorway. The driver made sure in advance I’d be fine, and when the passengers were disembarking, at least three asked me if I needed any help; one woman offered to carry my backpack. I thought it was really kind, but I got an insight into why so many disabled people find it frustrating to be constantly offered help. I thought, the third person would have heard me refuse the first two, but still asked me as though I’m not sure of what I can and can’t do, which is annoying, to be honest, but I was grateful for the offers. We disabled people very often feel torn between being grateful for offers of help but resenting something in it at the same time. I know people mean well most of the time, but there is an underlying issue sometimes.
Anyway, I didn’t have too many dramatic problems, thankfully, although I really do struggle in the manual chair when I’m on my own. In preparation for returning to uni to do my Masters, I’m setting up a fundraiser page so I can get myself a motorized chair, yay. A manual chair is very stressful on many of my joints due to hypermobility. Fingers crossed! One problem I did have was in Home Bargains, where the wheelchair trolleys were being used by employees to stock the shelves. ¬_¬ I did complain to them on Twitter at least.
But as every day in a wheelchair teaches me again, the world has a long way to do in terms of accessibility.