Tag: The Disability Diaries

Worlds Apart: A Collaboration Between Aidan Bizony (The Disability Diaries) and Emma Steer (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.

Wheelchairs in Academia.

Emma Steer (Diary of a Disabled Person) and Aidan Bizony (The Disability Diaries).

From September 2014 to June 2017, I studied Nutrition at the University of Leeds. One extremely common misconception is that nutrition it is a relatively simple subject to study, with very little hard science to get to grips with. The reality is that over my three year course, I spent many hours in the lectures studying biochemistry and human physiology in great detail, and I used knowledge from physics, chemistry, biology, and mathematics on a daily basis. In addition to the lectures, I also spent a great deal of my time in various laboratories working on food processing procedures, food analysis, and studying the effects of nutrients on cell cultures.

Much like any other academic subject, the lectures were central to helping me understand my course. At first, some of my peers seemed to think that I had been given a place on the course out of pity, but soon learned otherwise when I consistently answered questions correctly and received high marks for my work. This train of thought is entirely forgivable though, given some peoples’ attitudes to political correctness.

I was provided with an assistant to help me get around the university campus, holding open doors and lifts, moving tables and chairs to accommodate my wheelchair, and fetching and returning books to and from the library. In addition I was offered support with note-taking, especially as my lectures were intense and fast-paced, requiring a rapid rate of note-taking that produced handwriting something akin to that of a doctors’. However, given that my main technique of learning involves repeatedly writing out notes, I decided to write my own notes in order to help me learn and simply learned to cope with the ache in my wrist at the end of the day.

Unsurprisingly it was in the laboratories where I needed the most support. People had to help fetch equipment and reagents, and return them to their rightful places or the cleaning station at the end of the experiments. I was allowed to perch on a rather uncomfortable wooden stool, on the condition that I could still move quickly enough if an accident occurred. Many of these experiments took several hours to complete, and by the end I was usually so tired that I could barely sit upright, despite having all the help the university could possibly provide me with. However I only ever left the laboratory early if it was necessary, earning the respect of my tutors and peers alike.

By the end of the course I had made many friends and learned many skills. I had transformed from a miserable hub of self-consciousness to a confident and relatively independent scholar with a passion for science and health care. University helped me develop into what I am today, as it does for any other student, regardless of subject or disability.

 

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 chose 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.

Close to the end of my Second Year and rapidly about to be thrown headfirst into my third and final year, I continue to realise that despite the various access problems and some people’s warped understanding of what it means to be disabled, my disability has not solely been a limitation to me or my fledgling university career. In fact, considering my life-long disability has had a dramatic impact on who I am as a person, the friendships I developed at university (which I hope will remain long after we graduate) have been directly influenced by the fact that I’m in a wheelchair.

Insofar as my disability shaped my interaction with university, I think university has equally influenced my perspective on my disability. Given the largely protected nature of high school, the fact that I am exposed to a wider variety of opinions towards my disability and still can thrive illustrates that while disability forms part of your life, disability doesn’t define you.