Goodbye, Degree. Hello, (Un)fortunate Readers

Hey Everyone,

It feels like a lifetime since I’ve written, doesn’t it? Anyway, I’m free for a bit so…

I finished the last set of exams for my Undergraduate degree last week. I’m now in that weird holding-pattern of waiting for my results to be released. If the exams went the way I think they did, I’m in a good position so yay. Still, my finishing my degree doesn’t mean the pressure’s off. It’s just shifted. My new goal: relocating.

At the end of September, we booked our flights. As of 22 September this year we made leaving for England a certainty. It’s no longer the semi-tangible idea my family had for the last three years. It’s happening.

I’ve been wanting to write for a while but, between being procrastinatingly lazy and too busy, it never materialised until now. If you’ve been following me on Twitter, you’ll know that I took most of October off due to the exam season. If you’ve been following me closely on Twitter, you’ll know that my self-defined deadline expired about a week ago. Lazy boy. Between work, university, and the various projects relating to our relocating halfway across the globe, there’s a lot to write about. My problem: sitting down and actually typing the stuff up.

With all the excitement recently, I’ve started quite a few posts and got distracted by ‘the shiny.’ Something that I think would be most interesting, though, would a brief breakdown of the various tasks involved in moving three people, two wheelchairs, and two Golden Retrievers from Cape Town to England. Or do you think a brief outline of my Master’s Thesis idea be more interesting?

Just know that I haven’t forgotten my readers. I’m busy drafting stuff for you guys. Hopefully, you’ll have something more interesting to read within a week 🙂

Is ‘Legalese’ a Defence?

Is something ‘right’ simply because it is legal? This question has been bugging me immensely recently; particularly from a disability perspective.
So often I hear someone saying “person with a disability” and it gets my blood boiling. When I ask them not to use that phrase in front of me, they defend themselves by citing the fact that ‘person with disability’ is the term used in South Africa’s legislation. In other words, they are using the ‘correct’ legal term and I should just get over myself. While, yes, ‘person with disability’ is a valid phrase in disability circles, I have a deep-seated objection to it as I find it deeply offensive. While my disability does not define me, I am defined by it.
At 21, I feel like I’m pretty secure in my identity. I know what I like; I know what I don’t. There are some moments I wish disability didn’t feature in my life but I’d be deceiving myself to deny its impact on my life. For better or worse, Cerebral Palsy is a part of me. For me to deny my whole identity because of the fact that CP might affect the way I carry off wearing a suit because I’m in a wheelchair is just as daft as if I were to ignore the disability altogether. Just because I’m disabled does not mean that my life ends. By the same token, I’m aware of the ways that my disability shaped my sense of self.
This fluid, somewhat-paradoxical relationship between selfhood and disability is precisely why ‘person with disability’ doesn’t sit right with me. As I’ve argued some time ago, this phrase doesn’t pay tribute to the extent disability can be something fundamental to your identity. Instead, it separates the person (and, by extension, their ‘personhood’) from their disability. Rather than acknowledging how disability is one cornerstone to your identity, the phrase implies that disability is some external force which happens to you. I vehemently oppose this idea. While you could argue that ‘person with disability’ allows for the distinction between disability as your identity and just a part of it, the implication that you are some passive entity on which the ‘external’ acts disregards the nuanced relationship between Disabled and Disability.
Given my objections to certain terms, does a politico-commercial entity have the right to dictate which terms I use? Can my employer ‘demand’ I use a particular phrase in my writing even if it is something I have an extreme political objection to? I don’t think so. I say this for two reasons: first, a legal term doesn’t necessarily consider the nuances of a situation has they have to be rigidly defined; second, there is absolutely no way rejecting ‘person with a disability’ would substantially change the content of what I’m saying. Other than the fact that ‘person with disability’ is a convention in some areas of society, there is no reason why ‘disabled person’ could not convey exactly the same meaning.
That said, an easy counter-argument would be that an organisation’s convention which should be obeyed. In this context, then, should you switch to their desired terminology? It may be a convention, be it dictated by legislation or otherwise, does not negate the term being offensive to some. In my case, I have a political and moral objection to the phrase ‘person with a disability.’ For me to bow to convention, then, would require me to break with my own morality. No matter the context, one should never surrender morals simply for convention’s sake. Just because South Africa’s legislation uses ‘person with disability’ does not mean that my moral objection to it is any less valid. While I can accept that some may accept this phrase by virtue of the fact that it is the legal construct, I am not one of them. More importantly, I will not allow its status as ‘the legal term’ to force me to back down from my beliefs.
Should we be precluded from identifying ourselves the way we see fit and for that identification to be recognised by others simply because it doesn’t align with a socio-legal construct? I think not. Do you?

Regression to Nicer Times – Part 1

Part the First – An Introduction

It’s early-July. I’ve finished my semester exams and, now that my results have been announced, I know I will be able to graduate my Undergraduate Degree in English Literature and History by the end of this year. To top it off, by early-December, my parents and I will bid a final farewell to Cape Town and embark on a new and exciting journey in England. Things are on the up. The idea of starting a new chapter in a new country where my opportunities increase dramatically is thrilling.

As good and necessary as this move is for me in particular, the organising, down-sizing, and mental shifts that accompany this next phase have left me feeling somewhat like the Roman god, Janus (from which the month ‘January’ is almost certainly derived), who has two faces facing in opposite directions – one to the future, and one to the past. Just as we should be wrapping up our lives with the last few months we have, I find myself reminiscing about many things: my early childhood, the start of school, the seventeen anesthetics I’ve had over the course of my life, writing my school-leaving exams, starting my degree, and, soon, the closing of the introductory chapters of my story.

Part of our leaving process revolves around reducing the amount of stuff we have to take over to the UK with us. Over the last week, I have been going through the several files and folders that my parents have kept on me in the twenty-one years I have been bugging them. They kept everything.

In a single afternoon, I was able to traverse over two decades of my personal history. I was able to read a 1998 letter stating my acceptance into the foundation phase of my school career while, moments later, I could pick up the last school photo taken months before we embarked on the exams that ultimately ended a thirteen-year-long chapter of my life and sent me catapulting into the beginnings of my professional field. All I can say is that holding eighteen years of history in your hands is a strange feeling that I don’t think you can find anywhere else.

No matter how good that feeling is, though, it’s bitter-sweet if I’m honest. Reading the letters and reports, listening to the recordings, and looking at the photographs has distilled the memories across the last lifetime into a purer, clearer rendition. Events I’d long since forgotten come running back like a speeding train, almost as clear as if they were playing out in front of me. In short, it reminded me that while Cape Town may not be perfect for me, it is the stage upon which all the actors in my life work their magic. Leaving might be good for me but I cannot deny that the gains will mean significant loses.

 

Service Dogs are People Too!!!

 

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The “dangerous weapon”

I came across a tweet by one of my favourite Disability Bloggers, Diary of a Disabled Person, that I feel needs to be echoed so as many people get the message as possible. For my part, however, I want to stress two things:

 

  1. Service Dogs are not “dangerous weapons”
  2. Service Dogs are legitimately allowed to be with you

I’ve had a Golden Retriever Service Dog for several years and the two of us get greeted often with one of two types of responses: “Aw, puppy! Can I hug her?” or “No dogs allowed.” The latter just baffles me. Part of me feels like I should congratulate them for identifying the fact that my aide is, in fact, a dog. The other part wants to scream.

For the six or so years that Sasha, my Golden Retriever minion, and I have been together, she has become (unsurprisingly) a key part of my interaction with society. To be told by people who clearly don’t understand the role ‘service fluffies’ play that the dog is ‘unnecessary,’ a ‘pet,’ or “dangerous weapon” (yes, that legitimately happened. You can read more about it in my earlier post, The Weaponised Pooch) ranges from mildly irritating to mind-bogglingly infuriating. While I can see the sense in restricting access to various non-human species, your telling me that my “dangerous weapon” is not allowed in is denying me access to a key resource that is integral to my being able to fully function in society. You wouldn’t, I hope, insist that a frail person leave their cane at the door and somehow be able to function properly; why would you do it to a service dog? The service dog, in effect, is a furry, animate cane to those who use them.

Yes, we love our service/guide dogs but, frankly, a lot of people would rather not be in a situation in which they need to have that service or guide dog with them. Since this utopia doesn’t exist, though, those dreams are merely dreams. The service or guide dog exists to serve or to guide those who need that bit more assistance to be able to function at their best in society and so that, like everyone else, they too can enjoy the fruits that society has to offer. To deny those individuals’ service/guide dogs access is denying the person access to an equal life. To ban the dog, then, is to ban the Man.

In a world which is becoming increasingly accepting of differences, it saddens me to think that service and guide dogs are still being seen as simply an animal. Yes, they are animals; they’re also so much more.

Stairs, Curse You!

Screen Shot 2018-04-13 at 2.33.14 PMThe latest collaboration I wrote with Diary of a Disabled Person illustrates just one of many ways that England and South Africa vary with respect to their Disabled Communities. Having recently returned from England a week ago, something I have come into contact more than in South Africa is stairs inside homes and other buildings (perhaps it is just something to do with where I was but the fact remains nonetheless). While a lot of these places had lifts for wheelchair-users and others who might need a lift, it got me thinking: if I want to move to England, what would I do about stairs in my home?

Now that I’m back in Cape Town, I decided to set myself on the case and do a little digging. In my research, I came across a UK-based company, Stairlift Guru, who set themselves up to help combat the dreaded, universal curse of wheelchair-users: stairs. From what my digging dug up, Stairlift Guru helps the ‘stair-challenged’ to hunt for, compare, and contact companies that would then install a stairlift for them.

Why not a normal lift?

In a residential setting, I think the answer would be pretty obvious: space. A person’s home, generally, is a fraction of the size of a bank, museum or other public building. Having a traditional lift, then, would take up too much physical real estate to make it a feasible option. Moreover, traditional lifts are vastly more expensive. A stairlift, while not necessarily perfect for wheelchair-users, is significantly cheaper in a variety of ways. Continue reading

A Thought on Photography, Memories, & Identity

Birthdays are weird things. In a world where youth is often considered an ‘ideal,’ the fact that we actively celebrate an occasion that marks our ageing is a strange practice. Still, the fact that we celebrate personal development is fantastic. In that sense, birthdays don’t celebrate ageing so much as growth. As much as birthdays offer an opportunity to dream of the future, they also offer an opportunity to look back down the years and remember the people, places, and experiences that ultimately come to form what we consider to be fundamentally us.

Having come back from England three days ago, where we celebrated my twenty-first, I’ve been slowly sorting through my things and mentally preparing myself to move there at the end of the year. Going through the various cards and photographs that resulted in the celebration and trying to decide where I should keep them, I came across a folder with a whole lot of cards, letters, and photographs collected over several years. Spending the last while reading through all of them again, it got me thinking.

A lot of these photographs I don’t even remember being taken yet just seeing the corner of them throws me back over 10 years in some cases. Thinking about it, the old cliché that ‘a picture tells a thousand words’ comes to mind but I disagree; a picture describes the indescribable. Seeing these photos that, in some cases, I forgot even existed did not merely remind me of the event; they transported me back into that very moment. Photos don’t merely reflect an event; they become them.

Experiencing the profound, emotional influence something as simple as a photograph can have, I’m forced to wonder whether this selfie-loving time we find ourselves in still captures the essence and power of a photograph. Does the higher volume and seeming relative disregard for the importance of the photograph destroy its power? If photography is so emotive, surely our photographs would have a profound influence on our identity – our very ‘us-ness?’

If we consider the importance of photography, social media, and public perception on our identity – our very ‘us-ness’ – I wonder how much of who we are is due to others and how much of who we are is truly our own.

 

NHS v Medical Aid: A Collaboration with Diary of a Disabled Person

There are a great many cultural divides between the UK and South Africa, and unsurprisingly this extends to disability. With two radically different systems of health care and financial support for the disabled, the lives of wheelchair users in either country greatly differs, as do the social perceptions and stigmas surrounding disability.

UK (Emma Steer, Diary of a Disabled Person).

One of the defining features of British culture, aside from an addiction to Gregg’s bakeries and a general disinterest in the royal family, is the National Health Service (NHS). The NHS allows UK citizens to receive medical aid whenever they need at no cost bar a portion of the tax they pay to the government. Of course, the average citizen has to pay for prescriptions, opticians, dentists, and doctors letters, costs which add up to a surprising total, but this system ensures that medicine usually reaches those who are ill regardless of what is in their bank account.

The NHS is under ever-increasing pressure to diagnose and treat more patients in a shorter time span, with less money and resources to support them, and it’s prominence as a topic on the news is growing every day. The fears that the NHS will either crumble under its own weight, or that it will financially ruin the government have lead the public to bemoan anyone who is deemed a strain upon the NHS, and on more than one occasion, I have been deemed one of those strains.

In addition to the cost of my medical care is the financial support from the government to cover the costs of using a wheelchair, as obtaining a suitable wheelchair on the NHS is a bit like trying to herd fifty cats into a bath at once. Since many assume that I am unemployed the moment they set eyes on me, or rather, my wheelchair, it is assumed that the cost of unemployment support can be added to that total. Even for those who cannot work, the stigma should not be bemoaning the cost of their financial support, but bemoaning the lack of suitable work for the disabled.

All-in-all, the bombardment of news articles depicting disability as a strain on the economy, rightfully or not, has led to a whole new set of stigmas about disability. Instead of being pitiful and patronised for our incapacities, we are despised for the effects of those incapacities. It has even been said by a prominent politician that disabled employees are problematic due to reduced productivity and increased costs of adapting the workspace to suit them, but of course he deems disability to be an inadequate excuse for unemployment, and condemns those that are forced to live that way.

The disabled are simply reduced to a number; the financial cost they inflict upon society.

South Africa (Aidan Bizony, The Disability Diaries).

While I can understand people’s frustration with the NHS because, yes, it has its flaws and we must be aware of those, I still marvel at the concept. Leave aside, for a moment, all the negatives that the NHS presents and look at the concept behind the structure: an attempt by the government to give its citizens a good, if somewhat tedious, medical scheme. South Africa doesn’t have the NHS.

Rather than having a government system that provides good, safe healthcare, South Africa’s public healthcare leaves a lot (I really mean “a lot”) to be desired. To expect South Africa, given her history, to have a medical system on par with the NHS – even in its current incarnation – is perhaps a little naïve and overly-critical but I do feel that we could be closer to the ideal of reliable, sustainable, safe healthcare than we are at present.

I know that the South African system is not necessarily the world’s worst healthcare system but, still, it leaves a lot to be desired. As bad as the public system is, I have to admit that the private system (if you can afford the high fees) is good. Luckily, we’re in a financial position to afford private medical care. As fortunate as it is that we can afford good, reliable medical care in South Africa is, it distresses me immensely to see that our premiums continue to increase with practically no rise in the benefits we receive. When you consider that inflation is a real thing, the fact that the benefits don’t grow in proportion to the premiums is all the more disturbing.

To be honest, the medical aid scheme in this country is increasingly becoming a ‘damned if you do; damned if you don’t’ thing.  But, yes, it costs a lot and it does continues to get worse but at least you get the payments you need, right? Nope. The plan that I’m on (which is one of the highest with the country’s ‘best’ medical aid) has had payments declined that I am legally entitled to. For instance: my plan allows for a certain amount to be made available to me each year for “external medical benefits” (e.g. wheelchairs) but I had an experience relatively recently whereby a chair I bought, which was within budget got declined because we didn’t file the correct paperwork. Since the reason the incorrect paperwork got filed was because Discovery, the Medical Aid Scheme, provided us with the wrong forms. To cut a long story short, we were on the verge of taking them to court when a letter from our lawyer to the CEO’s personal assistant lead to the payment we were entitled to six months earlier. The trouble aside, we at least got the wheelchair we ordered. That is until three years later when we had to repeat the process.

As bad as the NHS has gotten when compared to what it used to be; it’s still far better than the public system we have in South Africa. Hell, when I was in England in mid-2015 my parents and I decided to visit a local, NHS hospital in London and were surprised with what we saw. In retrospect, given the exposure we had of the public healthcare system, it is hardly surprising that we were shocked. We discovered that the NHS, public hospitals in England are better than the very expensive private hospitals that an elite of South African society can afford. Needless to say, the benefits of the NHS is a not-insignificant motivation to make the move to England as quickly as we can.