I came across an article recently written by Virali Modi on Slate.com outlining some of her experiences about being in a wheelchair. I know that I’ve explained why I’m in a wheelchair, how I think slightly differently as a result, and how it affects my daily living but what I don’t feel I’ve explained well enough is how my being in a wheelchair makes me feel different… in good ways and bad.
As with anything, the wheelchair has its ups and its downs. In my previous post, Just How Much Does the Wheelchair Affect my Daily Living?, I told you that the wheelchair is something I don’t consciously think about that often and that I often ‘see’ myself as standing until there is something that makes it obvious to me (like a bookshelf being too high). While all of that is true, I have become more aware of other little things that I realise behave slightly differently as a result of the chair since I published that article. Since I designed the blog to be a medium for me to express my opinions and experiences on life with a disability, I feel I should provide an update to the original article. So here goes…
1. I’m always seated
Although I’ve been disabled for my entire life, the wheelchair has only been part of my life for the past five or so years. Even when I wasn’t in a wheelchair, though, the nature of how I ‘walked’ was largely based on ‘hanging’ from my arms. In other words, I never truly stood. While I never stood properly (in the sense of weight-bearing through my feet and legs) I was still verticle.
Now some years down the line of being in a wheelchair, I still find myself using words like ‘walking’ or ‘standing’ when referring to what I’m doing. It’s just part of my vocabulary and I don’t notice myself using it until the person I’m talking to has a decidedly puzzled look on their face. Once the initial confusion subsides, however, they don’t seem to mind it too much.
In February 2016, I started an Undergraduate Degree at the University of Cape Town in English and History. Initially, I wanted to do Law but decided to embark on my passion for Literature instead – something I’m extremely glad I did now that I think about it. While a lot of my old high school buddies spend their types in laboratories or in Finance Lectures, I choose to spend my time debating word-choice in centuries-old novels. I’m happy with what I do. It, too, is one of the few avenues in my life that can be entirely disentangled from disability. Don’t get me wrong, disability is a part of who I am but I don’t want to be dominated by it all the time.
As much as my field allows me to separate me from my physical limitations, sometimes the campus itself and the ideologies of those around me find a way, as John Keats put it, “toll me back to my sole self.” Granted, a physical disability is bound to bring with it some challenges that mean the experience is different but I don’t see how the real-world complications should be allowed to creep into my academic life. To think, though, that 150+ year old university built on a mountain must suddenly redesign itself for a relatively small portion of the population who have certain physical difficulties is naïve – particularly when you consider all the other problems South Africa must address.
Regardless of the various difficulties I have in navigating the campus, there are several groups who strive to make the academic experience as separate as possible from the disability limitations students face. For instance, since the campus bus system is not wheelchair accessible the UCT Disability Service arrange alternative, accessible transport so that I do not have to be beholden to friends and/or family to get me to my classes and my classes are taught in wheelchair-accessible venues.
Sorry for not posting in a while but it’s been a hectic couple of weeks. VARSITY’s Sports Editor asked me to write an article on Archery and Disability for the next issue. Since it might interest you, below is a copy of the article I sent to the editor today. Hope you enjoy.
The fact of being in a wheelchair, often, makes a lot of popular, ‘traditional’ largely inaccessible to wheelchair-users without significant changes to the infrastructure of the sport. While a wheelchair limits the sports you can get involved in, archery is one of those sports where the wheelchair is largely of no consequence to your performance. The very nature of the sport renders one’s wheelchair – often a focal point for divisiveness – virtually irrelevant.
With news of Jerry Lewis’s death flying around on Social Media, I became aware of his statement, “[If] you don’t want to be pitied as a cripple in a wheelchair, stay in ya home” through a tweet from Emma Ladau. Regardless of context, this kind of thinking makes me sadder than I can express.
I was born with a physical disability and have spent several years of my life in a wheelchair. Does that make me deserving of pity? Yes, disability has been a part of my life and will be forever. There’s nothing I can do to change that. While disability is part of my identity, it is not the only thing that makes me who I am.
When I think of what defines me, the first things that pop into my head is that I value friends and family above everything, I’m a Literature fan, and that I’m doing what I love. Only after all those things do ‘disabled’ or ‘wheelchair-user’ make an appearance. Yes, being a wheelchair-user comes with some challenges but life is full of them. Should one be pitied because they have challenges when, if we’re honest, everyone has challenges of their own? I think not.
Because of the fact that I was born with a disability, my disability and my wheelchair by extension, cannot be removed from my identity. That said, it is true that some people do see disability (particularly physical ones as they are often the most visible) as ‘pitiful.’ Does that mean that my identity, either in part or as a whole, is pitiful?
I think it’s time I tell you why I’m in a wheelchair even though, technically, I have the ability to ambulate. While I might be able to physically create the motions which one requires for walking, I have less than zero balance on my feet. To illustrate how little balance I have something I often say to people, and I’m not exaggerating, “A brick would float before I’d be able to stand unaided.”
So, why the wheelchair?
In a word: simplicity. Yes, I can ‘walk’ in a walker but the majority of them are high-risk to use as, although the help with walking, they often do very little in the way of supporting you. Combine the lack of support with non-existent balance and the result is not a pretty one.
Yes, I can ‘walk’ in a walker but the majority of them are high-risk to use as, although the help with walking, they often do very little in the way of supporting you. Combine the lack of support with non-existent balance and the result is not a pretty one.
As I’ve said in a few other posts on this blog, I was born with a physical disability and have spent my entire life having to use some kind of mobility device. At no point in my life have I been entirely ‘normal’ and experienced life from a ‘non-disabled perspective’. Although I’ve peppered details of what my life is like, I don’t think, I have sat down and given you a comprehensive, all-in-one explanation of how I view this topic. I plan on rectifying that now. To make this a little easier to write and, no doubt easier to read, I’m going to structure it around 3 questions.
A friend of mine from university shared this blog post by Sarah Wilson, 20 Things Not to Say or do to Someone in a Wheelchair. Since reading the article and sharing it on my FaceBook page, I pretty much for got about it until yesterday when I rediscovered this gem.
It wasn’t until I read the article that these things came out of the shadows screaming their inappropriateness. A lot of these such as the “coming down to my level” and “patting me on the head” occurred to me personally.
A couple of minutes ago while trying (in vain) to find something useful to do, I discovered this on Pinterest:
People, this is the cardinal rule. Remember that.