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.
More and more these days, there is a growing need for political correctness – be it with respect to race, sexuality, gender, or disability. The shift from the archetypal, misogynistic, narrow-minded approach is a movement I wholeheartedly support. To support a changing paradigm, though, does not exclude you from being able to disagree with elements that develop as a result of the emerging paradigm. The use of the term ‘differently-abled,’ which is gaining popularity in the Cape Town Disabled Community if not internationally as one of the alternatives to ‘disabled,’ is something I disagree with. Before you delete the website and stop reading the blog, at least give me the next couple of minutes to outline why it is I find myself repeatedly disagreeing with the shift from ‘disabled’ to ‘differently-abled.’
While I might not agree with the term, there is a lot to be said for the ‘differently-abled’ argument. One of the strongest arguments I’ve heard in its defence, in fact, was that it acknowledges the different strengths and weaknesses in individuals, thereby highlighting what disabled individuals can do rather than what they can. The reason behind the term – as a way of highlighting what one can do as opposed to what they can’t – is something that I like about it. The problem, for me, comes primarily in the fact that while it acknowledges the strengths versus weaknesses argument, ‘differently-abled’ does not do enough to acknowledge the significant physical, emotional, and psychological limitations that a disability places on an individual just by the nature of its existence. These added limitations can be, and often are, severely limiting and disabling to the individual they effect. While I personally prefer ‘disabled’ as it does not shy away from the negatives that are natural attributes of the phenomenon, I really do appreciate the way in which ‘differently-abled’ emphasises the positive attributes of an individual. While ‘differently-abled’ might highlight the positive attributes of a person, I do not feel that the term is sufficient enough to communicate the dramatic impact of disability. For me, ‘differently-abled’ just sugar-coats disability a little too much for my taste.
It’s been a month since I’ve last interacted with you on the blog but, yeah, life happens and all that jazz. Among all of the other commitments at the moment, I also seemed to have contracted a case of writer’s block – as one of my favourite childhood, fictional characters, Adrian Mole, would have said, “Just my luck.”
Recently, though, I’ve been feeling particularly creative so I should be back on the ‘blogging band wagon’ soon. Since my brain is deciding to give me the silent treatment on The Disability Diaries front, I feel like opening up my content up to my readers. If you want to know my thoughts etc. on a particular topic feel free to e-mail me, reach out on the FaceBook, Instagram or Twitter accounts.
Considering it is near midnight in Cape Town at the moment, I don’t think I will be able to accurately discuss some of the ideas that finally began swimming around my head at the moment. I decided to write this post tonight just to keep The Disability Diaries alive and well while I begin drafting the new posts.
Don’t hesitate to contact me if there is anything you want to know about me.
Bye for now and here’s to a wonderful new year,
In what way does my acknowledgment of you, my desire to engage with you, and my getting out of bed make me worthy of congratulations? Why does my going about my business get special acknowledgment? What really makes me different? Yes, I have a disability but am I not entitled to a life outside of bed? Can I not function in society without having my day-to-day life being cheapened by having it reduced to little more than ‘inspiration porn’ for the ‘normals?’
On three days ago I went for a drink with a new friend, Sané, at the Baxter Theatre. We had a wonderful time. In fact, in the three hours or so that we were there (save the fact I accidentally broke a glass) nothing could have gone better. Since I lived literally a few streets away from the Theatre we both decided to go back to my house so that Sané could meet my two Golden Retrievers. The idea seemed simple enough, I’d done longer trips in my wheelchair. More to the point: I’d gotten myself to the Baxter in my wheelchair unaided – the trip was more than manageable. So when we decided that we’d walk back to the house it was less a chore for me so much as it was another day.
I’ve had a disability my entire life and I fail to see any way in which this makes me ‘special’ or ‘fascinating’ beyond the fact that the methods I use are different to a lot of other people. When we think about the extent to which we (as humans) differ from others on an individual level my ‘different approach,’ in fact, is not so ‘different’ after all. I’m just being me.
Thanks to bizarre social constructs that give off a signal that I am ‘weaker’ and ‘less able’ than others and my achieving basic, full engagement with society is worthy of congratulation. These constructs literally suggest that my going out to buy milk from the local is a medal-worthy feat. I’ve never had much direct exposure to this beyond little children. My evening with Sané, however, proved to be the first major, and most obvious, experience of being characterised as ‘inspiration porn.’
If you’ve been following the blog’s Facebook page and/or the Twitter accounts, you most likely have seen my question about how we, both individually and as a society, react to illegal parking in disabled bays. Looking back and the post-history for the blog, I’ve discussed the mentality issues surround the ‘illegal parking issue’ but I don’t think I’ve adequately investigated different society’s reactions to the problem. I’m genuinely interested in how different people deal with a vehicle parked in a disabled bay illegally. At the same time, I’d like to understand what methods your society takes to combat the issue both practically and ideologically.
Leaving aside what we’ve discussed, I think it’s time I tell you how South Africa reacts to the issue as I’ve experienced it. While there are some individuals and organisations (like QASA or UCT’s Traffic Department) who do amazing work to combat the issue, something I’ve seen often at the places I visit are ridiculously low fines and/or the institutions not taking the issue seriously. Take a look at what I see as the three biggest ‘reaction problems’ I’ve experienced in South Africa:
Really low fines
OK, maybe it’s just the places I go to often but I’ve come across places who either issue fines that I think are ridiculously low by comparison to other countries. I can’t speak about anywhere else in South Africa since I’ve only lived in Cape Town but I still think it is worth pointing this out.
I don’t go everywhere in Cape Town so this might not be a complete picture of how it truly is but this is supposed to be my experiences so… yeah. A lot of the places I’ve come across, have a ‘clamp and release’ policy and the release fee is roughly between R150-R500 (the equivalent of $7-$35 or £5-£27 at the current exchange rate). I’ve heard of café bills that are larger. Surely, if the goal is preventing someone from doing this again, the fines should hurt significantly? Or am I unreasonable?
It’s exam season at UCT so blogging has, obviously, taken a backseat. That said, it’s time for another entry – if for no other reason procrastination.
I was checking The Disability Diaries Facebook Page (which I just you go and like now… go on, I’ll wait) and I re-found the cover photo I uploaded a while back. It raises a point that I think deserves some rehashing: “I may walk, talk, and move differently than you do, but on the inside I’m not so different.”
Disability doesn’t discriminate; people do.
People have been discriminating against each other for centuries. Perhaps, there is nothing more ‘natural’ than discriminating against others and holding yourself ‘superior.’ That does not make it right. While Darwinian Theory maintains that we are animals, humans generally like to separate themselves from the other animals and often see themselves as ‘higher-order beings’ – in essence, separate themselves from nature. What could be more ‘unnatural’ than fighting against instinct?
To those of you who say it is impossible to fight instinct, I say bah humbug. It is not ‘natural’ or ‘instinctual’ for a dog to sit on command when a person instructs it to, it is a trained response to a verbal/visual cue. The fact that an animal’s natural response can be controlled to a degree through conditioning, regardless of the animal’s species, proves that it is possible to manipulate original understanding. With this in mind, then, I do not see how humans cannot control the ‘natural urges’ to discriminate.
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.
As I pointed out in an earlier post, these bays do matter and it shouldn’t be used without a legitimate reason regardless of how long it is being occupied for.
As you no doubt have noticed from earlier posts, I have a particular issue with people parking in Disabled Bays illegally. While the response to the issue is usually great, there are times when the response is… less than ideal. Helped in no small part by my obsessiveness, things can get pretty heated when these issues aren’t resolved. Naturally, this causes a lot of anxiety, (un)necessary agro, etc. Luckily, a friend suggested I contact the QuadPara Association’s Whatsapp Hotline.
The hotline was released in 2014 as a way to combat ‘the problem’ and, on the whole, has been working effectively – at least when I’ve used it. While dealing with these issues is never fun, the hotline at least becomes a vehicle (pun intended) to reduce the energy, anxiety, and stress that the other methods of reporting lead to. What’s more, the hotline provides a safer medium in which to challenge this problem of illegal parking.
Please don’t crucify me for this, other ‘Parking Warriors,’ but the parking is not the issue. Frankly, if you have a real, justifiable reason for parking in a Disabled Bay I’m not too fussed. My problem comes in with the sentiment that often goes hand-in-hand with it: ‘I’m only stopping a minute’ or ‘It doesn’t matter.’
It was another hectic week or two for me so didn’t have might time to get around to writing recently; hence the delay.
As most of my regular readers know, I have Cerebral Palsy. CP, coupled with a whole lot of other reasons, is what made me decide to go into a wheelchair. I know that I’ve mentioned aspects of my disability before but, since it applies to what I’m a about to say, let me recap in case you’ve forgotten and/or new readers decide to join us.
In short, CP means my body physically is fine but it’s my neurology that decides to play games with me – and this ‘sassiness’ my brain feels compelled to exhibit only extends to balance. Physically, then, that means that I have the capacity to walk – albeit with additional support such as walkers etc. In my particular case, canes wouldn’t work as I have no balance whatsoever (when I say “whatsoever” I literally mean that bricks would have a higher chance of floating than I do of standing unaided). While I used a walking frame for years, it just became untenable for several, boring reasons I don’t want to get in to unless people prompt me, easier for me to go into a wheelchair.
CP, although a single disability, comes in several shapes and sizes. The same could be said about any disability. Just because two individuals share the same diagnosis does not mean that they function identically. Moreover, as I’ve harped on several times before, their condition does not define them.
I was leafing through Facebook late last night (as one does) and discovered a perfect video by a CP writer/Youtuber, Zach Annery, which sums up common misconceptions about CP. At the same time, though, a lot of the points he raises can be applied to disability more generally.
Check out his video here – it’s worth watching no matter your disability.
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.