Judgement Day.

People with disabilities face discrimination and prejudice in a variety of forms, be it the obstruction of an access route, the misuse of special facilities, or even just being stared at because we look weird. However what many don’t realise is that there is actually a lot of judgemental behaviour displayed by people with different disabilities towards each other, and it is just as insensitive and intrusive as any other kind of judgement. I am as guilty as any other when it comes to this kind of prejudice, and will freely admit that I frequently compare my disability to others’ conditions in a distinctly negative manner. Despite this I still think I have a right to say that this sort of behaviour is unhelpful, perhaps even hindering the progression of those with disabilities within society, and the troubling trend needs to stop.

There are two main scenarios in which the type of judgement I speak of arises.

Firstly the disability benefits that people receive to pay for special equipment and transport are often a cause for jealousy between those with disabilities. I know of people who are far more able-bodied than myself receiving much larger sums of money, and I know people who make me look like an utter wimp receiving far less. I also know that people of roughly the same capabilities as myself can receive drastically different sums of money. Sometimes people may have hidden aspects of their disability that may increase the need for support behind closed doors that the rest of us cannot see. Naturally this causes some upsets; ideally the amount of money given out should reflect the severity of the disability and the amount of help needed, but since so many people are involved in the process of awarding such benefits, who’s opinions, experiences, and budgets will vary widely, these financial discrepancies occur.

The outcome is that people become jealous and mistrustful of each other, questioning the true impact of someone else’s disability on their life, or even questioning whether the disability exists at all. I have faced such accusations myself but I confess that on a few occasions, I’ve been the accuser. I now try not to find out what money other people receive because if I don’t know, I can’t judge them for it.

The second situation is probably the most common; access to appropriate facilities. Many places only have 1 or 2 disabled toilets or changing rooms, which many perfectly able-bodied people choose to misuse. With no way to tell the difference between someone misusing the facilities and someone with a hidden disability such as the discrete bags to collect human waste following certain surgical procedures walking out of the disabled stall, those with genuine disabilities face the same judgement as the able-bodied people. Again I’ve been guilty of this myself, as having to wait an additional 10 minutes every time I wish to use the toilet becomes tiresome very, very quickly.

Admittedly if people didn’t misuse disabled facilities then we would know that whoever came out was actually disabled, and the judgements wouldn’t arise. Similarly if the availability of accessible facilities was increased, the competition for them would decrease, reducing the intensity of the problem.

The judgement and mistrust between those with disabilities can have catastrophic effects on someone’s self-confidence and mental health. It can make people not want to leave the house at all, instead choosing to sit at home idling away the time. It also reflects badly on disabled people, giving those who aren’t disabled a reason to treat us with scorn and judgement themselves. Perhaps the time has come to accept that the term disability can mean thousands of different things, effecting people in thousands of different ways. Instead of sticking our noses into other people lives, perhaps we should be more interested in our own and how to improve our own circumstances, instead of trying to derail the livelihoods of others.

Park Life.

If anyone ever tries to tell you that immigration is destroying Western civilisation, you might want to show them this blog post. I’m not just saying this because the extra publicity would be nice, although that is true. I’m saying it because I have solid evidence for the contrary.

Jarred and I were having a picnic in the local park, making the most of the rarely-seen sunshine which was beginning to sink below the rooftops of the inner-city buildings. The warmth remained however, broken only by the light breeze that fluttered past every few minutes. I was relaxed enough to find the old wooden bench we were perched on comfortable.

Image description: a picture of the park. There is a lawn, beds of roses, trees, & benches all visible in front of an old building overlooking the park.

It being such a pleasant evening the park was full of many people of different races and ages, the majority of which were enjoying a picnic similar to our own. There were even two girls with blonde pigtails and pink dresses running around with a puppy that were a Hollywood cliché for all that is good and innocent, although just the puppy would have been fine by me. There was also an elderly man walking alone, balancing precariously with two walking sticks, who settled himself on the freshly cut grass that was making my hay-fever go haywire.

We ate slowly, partly to relish in the summer sun, but also because we were having to keep the pigeons at bay who seemed particularly interested in our picnic. Towards the end of our mea, I noticed that the elderly man was struggling to haul himself back to his feet, and I waited expectantly for the English family sat on the bench next to him to help. They continued to watch from the side lines and just as I was about to nudge Jarred and ask him to go over and help instead, I saw that three teenagers were making their way over to the man having already spotted his predicament. The two boys took an elbow each and lifted him gently to his feet, while the girl bent down to collect his walking sticks and picnic bag, hooking the bag over one handle so it could be carried with ease. The old man thanked them before hobbling slowly away and the teenagers returned to their picnic bench, presumably discussing what had just taken place. I didn’t know exactly what they were talking about because I lack the ability to speak multiple languages, while these teenagers appeared to have a strong grasp of both English and their native Eastern European tongue, with only a mild accent distorting their exemplary English skills.

It struck me afterwards that the three teenagers had helped someone belonging to a generation that was stereotypically derogatory to immigrants, and not only had they had the compassion to help someone in need but they had also put aside those differences to do the right thing. It’s quite possible that those differences didn’t even cross their minds as they clearly wanted to help.

Immigrants are not bad people. I mean, what will become of those teenagers? Just think of the utter madness caused when they go on to obtain a good education or job, support community initiatives, and forge meaningful relationships with those around them. Immigrants face the same low level discrimination experienced by those with disabilities, whether intended or otherwise, and we both end-up facing similar setbacks on a daily basis. Perhaps that is why there is an unspoken, mutual respect between both groups as has been my experience.

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.

Stephen Hawking: A Brief Moment in Time.

In 1963 doctors gave Stephen Hawking two years to live. Little did they know that he would defy all odds, surviving for fifty-five years instead. Most people would have been content to be the medical miracle that proved the doctors wrong, but Stephen Hawking was not most people. He decided to use his time, however long or short, wisely.

Professor Hawking was a brilliant scientist, building on the work of Albert Einstein to send cosmological research in entirely new directions. He re-shaped the way we think about our very own universe, an exceptional feat. Alongside this he also helped to make the incredibly complex research accessible to the general public by making public appearances to give lectures, help produce documentaries, and wrote the book “A Brief History of Time” which does an excellent job of laying out what his research was about and what it all means. Later in his career he also co-authored a series of children’s books where all the events in the stories were theoretically possible, helping to spark interest in the minds of the next generation of scientists. While not a physicist myself, I still feel that his contributions to the scientific community are immense and unforgettable.

For any human to achieve academically what Professor Hawking did would be worthy of celebration, but to do this in the face of an incurable and devastating illness that gradually stripped away his ability to communicate his ideas to others is equally as mind-blowing as any of his research. In doing so he helped prove to the entirety of Western civilisation that disability does not mean that someone is unable to make valuable contributions to society. He helped to normalise disability in the eyes of the public and to raise awareness for the equal treatment of the disabled. By making frequent cameo appearances in TV shows and adverts, often blatantly making fun of his own predicament, he made the rest of the world comfortable with the notion of disability. He humanised us all.

Usually the death of a celebrity might warrant a tweet or a short Facebook post, but Stephen Hawking deserves a whole lot more. As both a scientist and someone disabled, I want to recognise him as nothing short of an icon who changed the world. May he rest in peace.

Image description: a colour photograph of Stephen Hawking.

Things Just Got Complicated.

Relationships are complicated. Relationships while one or both partners are chronically ill or disabled results in an explosion of chaos that equals filling a volcano with Coca-Cola and Mentos mints, and then making it angry by filming it with a phone rather than living (and probably dying) in the moment.

Finding wheelchair-friendly date venues is like looking for a needle in the worlds’ largest haystack while blindfolded, and only being allowed to search with your nose and mouth. Lots of places have steps in the door and the members of staff at such establishments don’t seem to grasp the concept that no, I can’t take a bleeding run up. Sometimes the rarest of all luxuries will be provided in a ramp, or even more special a level entrance. Even then the accessible entrance may require unlocking by a member of staff who is distinctly inside the building, and once inside the tables may be so tightly packed together it’s impossible to get around. I have even known cases where the tables are very tall and I need a periscope to see my drink. Best of all the inaccessibility is usually put down to “well, no one in a wheelchair ever comes in here”, having failed to understand that we can’t get in. So the same few cafes, bars, shops, and the cinema become second, third, fourth, and fifth homes, and I have loyalty cards for every single one. It’s got so bad that the café usually has my order ready for me by the time I get to the counter, and they are on first name terms with me.

Once we’ve embarked on a date the second complication rears it’s rather ugly head. No one thinks it’s a date, probably because going on a date is so damn complicated in the first place. Jarred is mistaken for my carer so frequently I’m considering buying a bell to summon him when I need his assistance. When he puts his arm around my shoulders or pecks me on the cheek, the looks of shock and disapproval he receives is something quite extraordinary. They seem to think that he is taking advantage of an innocent disabled girl to get laid, and that I couldn’t possibly figure this out and defend myself if this was the case. It’s not possible for someone disabled to be in a relationship of their own accord is it? Spoiler alert – it is.

Eventually the relationship progresses to the stage where the two families wish to inspect your partner and their family. Since trains don’t appear to know how wheelchair physics works travelling any sort of distance is difficult, and sometimes the cost of travel or their work and family commitments prevents other family members from travelling up to see us. While to some couples this would be music to their ears because Mother-in-law being an anagram of Woman Hitler wouldn’t be so funny without the Mother-in-law clichés, most members of each respective family are actually nice people. Quite a few of Jarred’s family have managed to travel up to the north of England to see us, and we’ve managed to travel to London for a central meeting point on other occasions. Unfortunately moving closer to them would distance ourselves from my family, and the problem would simply affect different people.

After a while Jarred and I moved in together. The challenge here started when none of the letting agents that weren’t exclusively for student accommodation were accessible, so Jarred ended up doing the leg work there. Then we had to find an accessible home near the city centre within our budget, which was about as likely as an Oompa Loompa being elected for the US presidency. Oh… We found an apartment that was so central to the city that it confused Google Earth, and I could access it by entering the garage and going to the rear of the building. It came within mere pounds of our calculated budget, so I put the deposit down on the flat quicker than Usain Bolt after drinking 10 cans of Red Bull before anyone else tried to steal it, and it is now fully christened with tyre tracks on the floor.

Now I just have to organise an accessible wedding…

One Good Turn.

It was a dismal day in late October and the drizzle had soaked me from head to foot as I traveled into town. The light was fading quickly and the temperature falling even faster. There was little doubt in my mind that the first of the winter’s frosts would develop overnight.

I turned left onto a bridge crossing a main road. People were passing across the bridge in droves, it being one of the busiest routes in and out of town for pedestrians. To one side, huddled beneath the railing, was a homeless man. His thin and worn blanket gave little protection against the cold and every possession he had was dripping with rain water.

Nearly everyone on that bridge saw the homeless man and nearly everyone carried on walking anyway. I’m sure they had their reasons. However, for whatever reason, I just couldn’t go past him and leave with a clear conscience.

I had a flapjack in my handbag which I’d been planning to eat upon returning home. I reached into my bag and handed it to him without making a fuss. It wasn’t a big deal; he had far more need of it than I did. He looked up and thanked me with such genuine compassion it took me by surprise. We exchanged a few short sentences and then I set off again, thinking nothing more of the matter.

A couple of months later I was at a Christmas event serving free mulled wine and mince pies, which was inevitably crowded. Among those in attendance were several homeless people, who the staff welcomed along with everyone else.

I was struggling to navigate through the crowd, most of whom completely ignored me if they were even aware of my presence at all. I came to a heavy door, which I struggled to hold open as I tried to pass my wheelchair through the narrow gap without hitting anyone. Clearly someone had noticed my predicament, because I felt the weight of the door taken off my wrist. I looked up to thank the person holding the door open for me, and to my surprise and genuine delight, I recognised the homeless man I had helped before. He simply said “one good turn deserves another”, and then he was swallowed up by the crowd.

A couple of years later I was sat in a bar with a good friend, when the same homeless man walked past us and nodded at me. Naturally this led to me explaining what had happened. When I’d finished speaking, my friend laughed and called me “the Good Bradfordian”, à la the biblical parable.

***

When I was a child attending Sunday school the parable of the Good Samaritan had always confused me. It seemed to me to support basic racism because we are repeatedly told that certain passers-by were expected to help, and that the Samaritan wasn’t simply because of where he was from. I didn’t understand why being Samaritan excluded you from the expectation to help, nor why being from elsewhere guaranteed your help.

Similarly the story also suggested that it was a good idea to help people because you would be rewarded, and the richer the rescued person was, the greater the reward. I failed to grasp why a motivation to do the right thing would be needed, instead believing doing the right thing to be the reward itself.

I expected no reward for being the one who did the right thing. Why should I? Just because I’m from a stereotypically rough city doesn’t mean I can’t help others and have no compassion for them, and neither does being disabled. I am almost certain the homeless man expected no reward for holding the door open for me, and probably failed to understand why others wouldn’t help me either. I would hope we would be in mutual agreement upon this matter; it is simply a shame he may never get to read this.

Boredom Looms.

It’s a commonly held mis-belief that scientists are not creative individuals, but given that we create new techniques and products on a daily basis, I would beg to differ. As a scientist myself I turned to creativity when I fell ill, as suddenly the large chunk of my free time spent being active became an empty void of boredom and brooding. Fortunately over the past few years, crafts as relaxation and therapy have become popular, meaning I had access to a wide variety of relatively cheap materials.

Among the most popular crafts of the time were the small, multi-coloured, elastic “loom bands” that somehow managed to work themselves into every nook and cranny from children’s noses, to between the cushions on every sofa. I bought a couple of books full of patterns and models to make and even bought some beads and charms to incorporate into my designs. I spent many happy hours engrossed in the craft and I don’t suppose many people are excited to receive a huge bag of elastic bands for their 20th birthday.

Although the products of my efforts were somewhat cheap and cheerful, they got me a lot of attention when I was wearing the bracelets, particularly off admiring children. They also made great gifts when I wasn’t sure what to get someone.

Image description: a black bracelet with silver stars woven in.

For our first Valentine’s Day together, I bought Jarred the clichéd aftershave, and also made a dodgy-looking Kylo Ren and Rey out of the loom bands, characters we had both adored in Star Wars: The Force Awakens, and The Last  Jedi. Jarred found them particularly charming, but one of the bands had snapped whilst in the gift bag, and Kylo was decapitated by his own light sabre. Fortunately it was easy enough to weave another band into its place, although his head is slightly askew to this day.

My personal favourite of my creations is the skeleton I produced using white bands, with silver beads for ball-and-socket joints and black beads for eyes. It was far easier to create than it looks but is still effective, and makes quite the addition to the pin-board beside my bed.

Image description: loom band skeleton.

Childish as this craft may seem I enjoy it and find it relaxing, and I enjoy the looks on people’s faces when I surprise them with a little model. They might not be costly or glamorous but people appreciate the time and skill that was put into creating them. All in all it seems to me to be a good use of my time, and is a definite improvement upon being bored and broody.