If there’s one thing I will hold my hands up and admit to, it’s that despite being a card carrying member of The Disabled Wheelchair Users Society, I know next to nothing on the culture, and yet I am always in the position of explaining disability-related things to people. The blind leading the blind, as it were…
Driving lessons, for example. When I booked my very first driving lesson, I sat there arguing for over 5 minutes with two different customer service workers from the BSM over whether disabled people could or couldn’t drive. The first person gave up and passed me on to their colleague, who explained calmly to me that if I drove a manual, I’d need at least one functioning leg for the clutch. I calmly told him that that was why disabled people who couldn’t use their leg tended to learn in automatics. I don’t even know anything about cars, that was just what someone had told me when I was first looking into driving lessons.
You’d think that these people, being the first people that potential learners interact with, would know some things about their company in order to keep the faith of the customers.
Alas, it seems like Logic is akin to Common Knowledge, and Common Knowledge is rarely so common.
Which takes me on to my point. You’d think that I, being the actual disabled person, would know a few common tricks of the trade when it comes to being disabled, but alas, I know next to nothing and it’s not like we’re given a “So you’re disabled” booklet to learn these things from. No, we know from people telling us, people passing on the messages, therapists, doctors, nurses… or at least we should be told. That’s not my experience. I’ve been handed tools and pieces of paper yet not how to do the exercises, as it were.
My latest problem is reading. It’s always been a problem, with my arms that are too long for my body, my stunted body being unable to curve at the spine (At least, not intentionally. I had Unintentionally down to a T, but then they put in the rods!). I could never read in bed because I couldn’t read lying down, if I read on my stomach I had to have a lot of pillows propping me up to the perfect angle. Until recently, my favourite position was sat cross legged on my bed or the floor, elbows resting on my knees so that I could hold up the book almost right in front of my face.
Now I can’t lean forward, I can’t rest my elbows on my knees and I definitely can’t sit cross legged. Even the most comfortable position right now only lasts about 15 minutes. How do I read?
For not very long, is the obvious answer. In pain is the more “woe is me” approach. But awkwardly would be hitting it right on my head. I half lean on my left side, whilst propping my side and back up with a pillow, the way it needs to be at ALL times, and holding myself up by way of left elbow resting on said pillow. Right leg bent for my fore arm to lean on, left leg straight as that’s the only position possible right now (maybe ever), book held awkwardly with both hands. 5 minutes later, a position change is needed or a rest.
I read Harry Potter and the Half Blood Prince in maybe 18 hours tops, excluding the three hour break I had to take whilst I whinged my heart out. Now i’m reading a book about the same size. It’s taken 3 days to get to 100 pages.
So I genuinely am left wondering; how do people similar to my situation and worse do it? When I was in school, I remember one friend had all of the school books he’d need, on computer with an interactive device. Sort of like an E-book, but also like a game. Now we’ve exploded with e-books for Kindle and the like, I suppose that would be the latest answers.
But I have over 100 books. I don’t want to re-buy all of my books just so that I can read in comfort. There has to be a solution out there. Or am I doomed never to read again? (Because out of principal, I refuse to pay again for something I already own)
I can’t and won’t believe that this is a problem that Hasn’t come up before. I refuse to believe that fellow people with mobility and comfort problems, who need customised equipment to assure comfort and a steady posture, have forsaken reading just because there was nothing out there to make it an accessible hobby for them!
Can we Have a Civilisation, here? Show me the way!