A Little Halloween Treat!

I’m just heading out to a Halloween party, and I thought you’d probably like to see my costume. So, without further ado…

Coco Bandicoot, Dr Neo Cortex, and Pura the Tiger from Crash Bandicoot!

Don’t forget; tomorrow morning I release the next installment of my blog!

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Alternative Reality.

I suppose it would be unnatural if I didn’t wonder where life might have taken me had I not suffered meningitis, or had I not developed chronic fatigue syndrome (CFS) as a consequence, even if those thoughts aren’t necessarily healthy. Having gone through this thought process multiple times, and having always drawn the same conclusions, I am no longer ashamed to admit that I’m glad it’s all happened. This might seem odd, but I intend to explain myself fully.

Prior to suffering meningitis, I was boring. I lived in a normal house, in a normal family, doing normal things like going to school and watching TV. By no means was that a negative, and those are memories that still mean a lot to me, but I was completely unremarkable. I was terrified of not fitting in with my peers at school, and went out of my way to make myself “cool”, only to start hating myself all over again when I inevitably failed. Some people are born abnormal, and I guess it’s with them that I belong.

Then the meningitis hit like a slab of concrete, and everything I thought I knew was turned inside out. The majority of those I called my friends turned their back at the soonest opportunity, and I found myself unable to forge meaningful relationships with anyone else. It was at this point that I began to notice the stigma surrounding disability, and all the inequality that came with it, and I fell into a deep depression. I tried to kill myself. I self-harmed. I decided that if people would only ever hurt me, that I’d alienate myself from them. I shut myself in my room, listened to music as the artists were the only people who seemed to understand my plight, and threw all my energy into my studies as a distraction.

The day finally came when school was over and done with, and couldn’t have come soon enough. The following summer I had my hair cut shorter than ever before, had my ears pierced, and allowed my wardrobe to develop a distinct gothic vibe. I started university being openly alternative, and introduced myself to all the new people as “Mini”, an old nickname, and my internet persona. I met my best friend, I met my partner, and I found my studies vibrant and interesting. I grew more and more confident, and as I did so, I started to really express myself through my appearance, and then I became brave enough to fight back against the low-level discrimination I faced on a daily basis. A few months ago I started “Diary of a Disabled Person”, and the reception of my writing has far exceeded any expectations I had, however unrealistically dreamlike. In a matter of years I went from a boring wreck to an interesting one.

Had I not fallen ill, I may well have remained trying to fit in with my peers, and may have concentrated on that so hard that my academic work suffered. There’s a good chance that I would have found joy in my music, but not have found it as relatable as I do now, and I certainly wouldn’t have started this blog. I might have never developed the pure passion I have for writing that prompted me to write this brutally honest and perhaps slightly arrogant passage. I wouldn’t have developed the fighting spirit that has dragged me through the past few years, and my rebellious streak may have remained buried deep down. However, all of these things are insignificant in comparison to the other thing I gained; the ability to forge lasting, meaningful relationships, and the confidence to allow someone close enough to be able to see every last little flaw and insecurity without fearing that they would be exploited against me.

Being chronically sick is rubbish, and there are few days when I don’t wake up and think “I just wish this illness would leave me alone”. I will never ignore that, but I cannot ignore the positives either. I’m not being brave, or showing an unbreakable spirit by thinking like this; it is reality, and I don’t want an alternative one.

Rollywood.

I hope you’ll pardon me for the over-use of the “roll” pun, but I’m finding it quite entertaining seeing just how many phrases I can crowbar it into.

Apology aside, let me get to the point; there are a few issues with the depiction of disability in Hollywood. While it is wonderful to see films using more diverse castings to portray characters on the silver screen, and the portrayal of disability is usually far from offensive, there are a few inaccuracies that invariable work their way into the mix.

Take “Avatar”, for example, a film that chose to be a nerd’s wet dream of intricate graphics, over the interesting character development and deep political messages it could have shown. The protagonist is a wheelchair user, who upon the death of his identical twin, is called in to take his place in the avatar scheme. As he enters the military camp for the first time, two soldiers can be heard making demeaning remarks about the wheelchair, referring to the protagonist as a “sack of meat”. I have never once encountered such blatant discrimination; in my experience discrimination is much less obvious, and people may not even be aware that they are doing something that inhibits my ability to access a room, or perform a task. Similarly, I expect that this is not an accurate representation of the way the military reacts to disability, as it is something that can happen so easily in combat that they are regularly exposed to it, although of course I may be wrong.

Another recent film, “The Hunger Games” also fails to represent disability at all, despite it being an important part of the storyline. Those who have read the books will be aware that Peeta loses his leg as a result of an injury inflicted during his first time in an arena. Katniss uses her last arrow to form a tourniquet that, while it results in the loss of Peeta’s leg, keeps him alive. This is completely brushed over in the films, alongside Katniss’s loss of hearing experienced as a result of an explosion that requires expert medical aid to repair, and a meaningful bonding moment between Katniss and Peeta is lost, impacting the later films.

When Hollywood isn’t presenting disability as a cruel and unforgiving circumstance where no happiness is ever felt, it is presenting us as unrealistic super-powered beings with the mental and physical strength of warriors. Anyone familiar with the X-men franchise will immediately realise that Professor X falls into this category, although Patrick Stewart certainly brings a depth to the character that stretches beyond the wheelchair and his mind powers. A more obscure example occurs in “Mr No Legs”; a man without any legs has a wheelchair fully equipped with weapons such as throwing stars, and practically uses the arms of his wheelchair as a pommel horse to defend himself against an onslaught of fully able-bodied men, and the brakes of his wheelchair aren’t even on. While people in wheelchairs are capable of defending themselves to the best of their abilities, it would be completely ridiculous to have a wheelchair so heavily armed that you wouldn’t be allowed to progress more than 100 metres without the police stopping you for a serious conversation. The same goes for wheelchair bombs, which are a clichéd move that I have seen in many films and TV programmes.

Another thing that wheelchair users are not some kind of evil genius who develops a complex theory about disabilities influencing the superpowers depicted in stories and comic books, and to prove as such subjects an unknowing man to trial after trial to highlight his “superpower”. While the plot of “Unbreakable” is much more complex, and the characters far more intricate than I could ever give them credit for in fewer than 1000 words, I cannot deny that seeing a wheelchair user depicted as an anti-social creep with maniacal ideas makes me uncomfortable.

It would be nice to see more movies where a characters disability is not a major plot point, and the disabled person integrates normally with the rest of the characters, as disability should not be the defining trait of anyone, but a mere characteristic. It is no wonder people are uncomfortable and awkward around disability when we are portrayed as warriors and creeps on the silver screen.

The Fifth Bodily Humour.

Recently, I’ve seen the term “mobility fluidity” tossed around the internet like an over-cooked pancake, and in all honesty, I’m still not sure what to make of it. Since me not having an opinion is a rare event, I’ve decided to record the occasion.

The term addresses conditions like CFS or fibromyalgia that fluctuate on a daily basis. One day, an inflicted individual might be able to walk, but the next day they’d use a wheelchair instead. It’s not unusual for someone to label such an individual as a faker or attention seeker (lesser known Tom Jones lyric), and the term is trying to explain this issue.

There is, however, one slight issue. Fluidity can be used to describe someone exploring their gender or sexuality, but I’m not exploring my mobility. My legs are more unreliable than in-flight WiFi, and the rest of my body isn’t much better. That’s all there is to it.

What’s more, the type of people who find gender or sexuality fluidity unacceptable are usually the same type to label someone as a faker for their mobility fluidity. That is a huge generalisation, but hear (or in this case, read) me out on this.

People hear the word fluidity, and they either start discussing Newton’s laws of forces and motion, or they think a liberal is about to start lecturing them. Some will cheer the liberal on, and others will roll their eyes and ignore them. That means they won’t want to hear it when someone uses a word like fluidity in connection with mobility. It addresses the issue, but does nothing to solve it. Admittedly, I don’t have many ideas about how to fix this myself, short of using my wheelchair as a weapon.

The sentiment behind the terms’ development is entirely well-meaning, and while I want to welcome this with open arms, it feels more like trying to swallow a large, powdery tablet. The medical kind, not the electronic kind. You know it will do you good, but right at that moment you are wrestling with the urge to vomit like John Cena against The Rock.

Perhaps the problem lies with those who can’t understand that chronic illness is more complicated than EU politics, but yet another mildly patronising term for them to learn won’t get the concept through to them. I think that, maybe, allowing these people an insight into living with a chronic illness, however embarrassing or uncomfortable that may be, will prove a point. Having written that down, now sounds like I’m blowing my own trumpet. I guess I’m just trying to do the write thing…

London Calling: Part 3.

After eating we set off for a pub that is pretty famous amongst gamers; the loading bar. Various pinball machines lined the wall opposite the entrance, and there were other classic arcade games scattered around the room. On the wall facing the bar was a TV linked to a PlayStation 4, and there was another corner stacked high with various board games. Even the cocktails had game-themed names such as Skyrum. We had arranged to meet up some friends, primarily Jarred’s future best man for our wedding. We laughed and joked with each other, and I watched the others’ playing board games which I opted out of due to fatigue.

We decided to leave as the sky began to darken, catching a much cooler and quieter tube back to Green Park from Stratford. We changed onto the Piccadilly line to St Pancras, during which a woman entered the tube with a very friendly dog called Charles who licked my wheelchair while trying to lick my hand.

Once again I slept very well, and was only woken when the alarm rang. We got dressed and packed our bags, checking out of the hotel a little after 9 am, before returning to the British Museum to see the exhibits we had missed before. The morning was another bright one, but it was significantly cooler, and there was a distinctly Autumnal feel to the day.

When we arrived at the museum, we were directed along a route that surpassed the inaccessible wheelchair ramps, which they were working to replace. It was particularly reassuring to know that the museum staff had recognised the inadequacy of their disabled support, and were actively trying to improve it.

On the third floor of the British Museum, the mummies can be found. I was fascinated by the biochemical processes of mummification, and was particularly entranced by the ability of modern science to be able to determine the diseases suffered by some mummies simply by looking at their remains. As it turned out, the state of their teeth enabled the diet of the Ancient Egyptians to be understood too. I was also amused to find a prosthetic toe found on a mummy, proving that disability has been a problem for many millennia.

Pros[hetic Toe

A few rooms further through housed the infamous Sutton Hoo helmet, one of only four of the delicate and probably ceremonial Anglo-Saxon helmets in existence, and then we came to the hall of clocks. We passed through the darkened room slowly, looking at the wide range of mechanisms used to track time throughout history, eventually arriving at a Sony digital alarm clock, the like of which I had owned as a child. As we exited the room we came to a lovely view point of the museum, and it struck 11 am; there was a cacophony of chiming behind us much like the opening scene of Back to the Future.

British Museum.jpg

After exploring the Aztec and Enlightenment galleries on the main floor of the museum, we went to the old, slow lift to leave. Just as the lift arrived, a powered wheelchair pulled up alongside us. The man in it was exceedingly grateful when we pulled the manual wheelchair over as far as possible, giving him room to enter the lift besides us instead of waiting. I explained that I used a powered wheelchair myself most of the time, and knew just how frustrating it could be. He smiled and thanked us again as the lift arrived at the disabled entrance, and we made our separate ways across London.

We wandered through the streets of North London, making a small detour to buy lunch to be eaten on the train, and arrived at King’s Cross in time for our train. We approached the disabled support desk with our paperwork, and were invited into a quiet side room to wait for our porter. The quiet, calm room was extremely pleasant after the bustle of one of the busiest train stations in the UK, and was designed to help people who were anxious in crowds to unwind before the journey. The porter arrived as promised, and we were helped onto the train well before we were due to leave, and we relaxed into our seats. As we tucked into our lunches, the train began to roll slowly, and we were on the way back to Leeds. I fell asleep for a large portion of the journey, which was uneventful, and was very happy to see a porter standing outside our carriage as we pulled into the train station.

Train

London Calling: Part 2.

That evening I had a bath. The hotel was built over a set of tunnels, one for the trains in and out of London, and one for the various tube lines running from St Pancras, the tube station attached to King’s Cross. As I submerged myself in the warm water, a train ran underneath us, and the water made a strange bubbling noise around me. Having not eaten Mexican food recently, I was perplexed, and it took me a minute to figure out what the noise was.

Perhaps it was the fatigue from the long day, perhaps it was the alcohol, or perhaps it was the insanely comfortable bed, but that night I slept better than I had for months. Even the trains failed to wake me, and the rattling of their passing beneath us was strangely soothing. I didn’t wake until the alarm sounded at 8 am the next morning, and while eating breakfast, I discussed various futile plans with Jarred for stealing the mattresses.

The morning was bright and sunny, and after getting dressed, I leant against the window frame watching the trains rattle past until Jarred was also ready. We made our way to the nearest entrance to St Pancras, but the lift here had been closed without warning. Fortunately, at another entrance a different lift was available, and we went underground. We bought our tickets in the unbelievably stuffy ticket hall, and then hopped on the Piccadilly line to Green Park, which was the nearest accessible tube station to the Science Museum, our destination.

Tube

We went straight from the tube station to Green Park, and the fresh air was a welcome relief from the heated stuffiness of the underground tunnels. We had coffee at one of a small chain of coffee shops found in central London’s parks, and then made our way towards Buckingham palace.

Once Jarred had snapped the obligatory photo of me in front of the titular palace, we made our way through Hyde Park, along the edge of the Serpentine. The day was warm, and soon we shed our coats to hang them off the back of the wheelchair. About half way along the Serpentine, we spotted a heron wading through the water, slow and graceful as if it were royalty.

Eventually, we arrived at the Science Museum on exhibition road, adjacent to the Natural History Museum. Here, I met Jarred’s mother and little brother for the first time, and we went to the café in the museum to eat lunch together. Jarred’s sister, who worked at the Imperial College next door joined us for her lunch hour, and we sat together, laughing and joking as if we had known each other for years.

After this, Jarred’s sister returned to work, and the rest of us explored the Science Museum together. The space exhibition had life-size models of rocket engines, the moon-landing station, and even one of the surprisingly small Hubble telescope. Tim Peake even had an exhibition dedicated to him as the first Brit to enter the International Space Station, and the first Brit to undertake a spacewalk. The floor above housed an entire room dedicated to genetics and DNA, where I was able to answer far more questions from Jarred’s little brother, who is an aspiring scientist himself. I was in awe of the model built by Crick and Watson to discover the structure of DNA, one of the biggest and most important discoveries of the 20th century. Above this was the environment floor, and after this a floor dedicated to flight. This including model Spitfires, and even a model of the first machine ever to fly.

All too soon, the afternoon came to an end, and we were saying good bye to our family. The sun was still shining as we travelled back through Hyde Park and Green Park, returning to the tube station just as rush hour began to kick in.

Having bought an unlimited travel ticket for the whole day, we were able to pass the ticket hall in Green Park tube station, instead going straight to the Jubilee line headed for Stratford. While the platform was crowded, we didn’t have to travel far to the raised platform for wheelchair access, and within a minute the strong breeze that announces the presence of a train far before you see or hear it rushed past us. The tube squealed to a halt, and we were able to squeeze into the wheelchair space inside the carriage. Jarred clicked the wheelchairs’ brakes on to prevent any inertia-related wheelchair incidents, and then we were off, howling down the dark tunnels and stopping every few minutes. I felt a little like Katniss Everdeen headed to the Capitol of Panem, except I didn’t have to worry about a murdering contest at the end of the line.

At each stop, more and more people climbed aboard the carriage. Soon, every seat was taken, and most of the standing room too. It was easy to identify the regular users of the tube; they were standing unaided in the carriage, looking at their phones or reading a book with their bags between their ankles, swaying gently with the motion. The heat of so many crammed into such a small place was overwhelming, and I had to avoid several bags held on a level with my head, but I still had to wonder what all the fuss of the London Underground during rush hour was about, as I had faced far worse before.

Eventually, the train sped into daylight, and I was momentarily blinded after the darkness. Minutes later it came to a halt at the end of the line, Stratford. We left the tube, and wandered over to Westfield, the humongous shopping centre over-looking the 2012 Olympic park, where we ate our evening meal.

London Calling: Part 1.

Just prior to midday on the 30th August, Jarred and myself made our way down to the train station, a mere 10 minutes down a gentle slope surrounded by shops. I had borrowed my mother’s manual wheelchair which Jarred was pushing, as I wasn’t confident that the trains could accommodate my powered wheelchair. We grabbed sandwiches from a café hidden just behind the doorway of the train station, and sat in the waiting area looking at the departure board, waiting for the 1.15 pm to London King’s Cross (yes, that is the one featured in Harry Potter) to appear.

Half an hour before we were due to leave, we went to the disabled support desk. When booking the train tickets, we had also booked a porter and ramp in advance, and I had printed off the documentation to prove this. Once the documents were shown to the porters, they happily escorted us to the train, and by 1 pm we were safely aboard. The only fly in the ointment was the woman who had a pram in the space reserved for wheelchairs, who not only refused to move (despite the notices and even the law giving wheelchair users priority to these spaces), but once I had claimed a nearby seat and the wheelchair had been folded up, fretted to Jarred that it would fall on her precious offspring. Her precious offspring then continued to cry all the way to Wakefield, where I was grateful to see them exit the train.

A little over half way through the journey, having drunk a 500 ml bottle of Coke Zero, certain needs made their presence felt. I waited until the next stop before getting up and hobbling the few metres to the bathroom. Unfortunately, the train set off just as I was getting up again, and I very nearly ended up flat on the rather sticky floor. I managed to steady myself against the walls of the cabin, and then made the short journey back to my window seat.

As I sat down, Jarred began to laugh. Naturally assuming he was laughing at me for something stupid like having toilet paper stuck to my jeans (we’ve all been there), I glared at him. Then I realised that he was using his phone to track the progress of our train, and as it turned out, we were passing through the charmingly named “Bitchfield”.

Less than an hour later we pulled into King’s Cross, and a porter greeted us with a ramp almost as soon as the train had come to a halt. We made our way through the impressive train station, which in all seriousness has a dedicated Harry Potter shop, alongside a platform 9¾ complete with luggage rack entering the wall which fans spend hours queuing just to get a photo of.

We wandered out of the train station, from which our hotel could be seen. We crossed the insanely busy roads in the pouring rain, and were soaked by the time we reached the reception desk. The lovely receptionist offered us two key cards for our room, not just one, in case I wanted to venture out on my own. Given that I was relying on Jarred to push me everywhere, this would have been pointless, but the unprejudiced gesture was very much appreciated anyway.

The room we had been given was perfect, with plenty of room to park the wheelchair, and a bathroom full of grab rails to help me move around. The beds were twin beds, because in most cases a disabled person would be with a carer, and it wouldn’t be appropriate to share a bed. Fortunately, the beds were pushed together, although on occasion one or the other of us disappeared down the gap between them.

Tired as we were, it seemed a shame to waste the remaining afternoon in our hotel room, and so we made our way to a nearby attraction you may have heard of; the British Museum. It was both free to enter and accessible, although the tent where bags were checked by security guards had wheelchair ramps that were, rather ironically, almost impossible to surpass in the wheelchair. Just inside the accessible entrance to the side of the museum there was an old lift. The first time the lift arrived for us, however, we couldn’t enter because a family of physically able-bodied people refused to budge one inch. The lift being old and slow, it was another 5 minutes before we finally got to enter the lift.

With only an hour or so before the museum closed, we didn’t have time to explore more than part of the Ancient Egyptian display. However, we still had plenty of time to find some impressive artefacts, including the Rosetta stone, and this sheep-sphynx that reminded me of my favourite teddy, a sheep named Lamb-da.

Rambda

By 6 pm we had returned to the hotel, where we made hot drinks to warm ourselves through. After this, we made our way to the only accessible pub in the vicinity – Wetherspoon’s. Having travelled all the way to London, we ended up in a pub we have less than 10 minutes from our flat. One hotdog, millionaire sundae, and Strongbow Dark Fruits later, I was feeling very happy.

Roll Models.

I’m usually one to stay well clear of clichéd ideas such as the role model, as I believe that people should be themselves and not have to live up to anyone else’s standards. However, I cannot deny that there have been inspirations in my life, particularly where living with a disability is concerned.

Perhaps the most obvious choice for the role model of a disabled scientist is, of course, Professor Stephen Hawking. The man is legendary, and has not only pushed physics into ground-breaking territory with the discovery of Hawking radiation, but has helped to advance the medical understanding of Motor Neurone’s Disease, a relatively rare and peculiar condition. He has also been involved in encouraging children to pursue the sciences as viable subjects in schools, has co-authored a series of science fiction stories that are entirely feasible according to laws of physics, and has attempted to make complex physics accessible to most adults in his book “A Brief History of Time”. In all of this, he has not been afraid to expose just how debilitating his condition is, nor has been afraid to poke fun at it. In fact, he has featured on charity specials and TV shows like The Simpsons, and on most of these occasions his disability forms a comedic element of the performance. It would be ludicrous of me to deny that he has influenced the way I cope with my own disability, and has made me grateful for the things that I can do that he cannot, such as talking with my own vocal cords, as well as earning my respect from a scientific perspective.

Stephen Hawking

Other inspiring role models include two of the hosts of The Last Leg, Adam Hills and Alex Brooker, both of whom are missing part of at least one limb. Although neither is wheelchair bound, they have helped to make people more confident around disabled people, and have showed the viewers that disability isn’t the burden some make it out to be. They have highlighted the serious issues surrounding disability on a widely viewed television program so popular it got its own series of special episodes at the Rio 2016 Paralympics. Similarly, they have proved that disabled people are capable of caring about other social issues such as racism, sexism, Islamophobia, and homophobia, and in this they have earned my complete respect, and have helped me come to terms with my life circumstances.

The Last Leg

Although I am a lover of rock music, one other significant role model for me is pop superstar Lady Gaga. She is completely unafraid to stand up for what she believes in when facing an intense media following, and is open and confident about her sexuality and any other trait that sets her apart from the norm. She might not be disabled herself, but I am more than certain that if someone disabled approached her, she would not prejudge them, or talk to them in a condescending manner. I would dearly love to have the sort of self-confidence she exhumes, although I perhaps wouldn’t follow her fashion choices.

Lady Gaga

There are lots of people, some famous, some who are friends and family, who have inspired me, encouraged me, and helped me to become who I am today. While I do not wish to become carbon copies of any one of them, I would hope that my actions emanate their intentions, and that I could also have an impact on issues in the modern society.

Words Without Meaning.

Even as a young child, I found great freedom in writing. It was a way for me to escape the bullying I experienced at school, and to become immersed in a world different to my own. To be able to sink into someone else’s problems helped me not to think about mine, but the countless pages I filled with half-developed characters and meagre plots are long gone. They were words without meaning; I knew in my mind where the characters would go, and what they would say and do, and I never let anyone else see much of my work. The stories were already told. Besides the escapism, there was no purpose to the writing, and as such the joy I found in it soon dispersed.

I find that the pleasure of writing comes not from the putting of pen to paper, but in the knowledge that others will read the words you wrote, and will perhaps think about them and learn from them, and maybe even be emotionally moved by them. It is this that prompted me to create “Diary of a Disabled Person”, and it is this that keeps me filling the pages of notebooks while sat in coffee shops; a perfectly typical writer with a message to send.

This blog is not aimed at those with disabilities themselves, although I am extremely pleased that many disabled people have given me positive feedback and support, which means that I am representing the community well, and have avoided offending anyone. However, this blog is in fact targeted at those without disabilities.

Disabled people know what living with a disability is like; they do not need to be told once again by someone in a similar situation that there are issues in the way disability is incorporated into society. While I accept that disability support groups help some people, I find the culture of a large group of disabled people meeting up to sit off to one side moaning about being disabled irritating; nothing will ever change if the rest of the world doesn’t know that there are issues. Nothing will ever change if we don’t try to integrate with the rest of society. Martin Luther King had the support of the African-American community when he gave his infamous “I have a dream speech”, but the people he wanted to target were the white supremacists. It would be like preaching to the converted; it wouldn’t have an effect.

Those not living with a disability, or not living or working with someone who is disabled, is probably oblivious to some of the issues faced on a daily basis; how could someone be expected to know about something they have had no experience of? It is not a criticism, it is a fact, and I started this blog to address that fact. In my attempts to integrate with society, and to preach my message to those who have not heard it, I have made some headway in the battle to fully incorporate disability into modern society. The more people become aware of the issues, the more they will fight back against them, and support those with disabilities. Many people discriminate by accident; by not switching on an automatic door or lift, or parking over a ramp. Educating people as to why those things are significant will make an impact on society.

Perhaps, if anything, I’m trying to stir up a little trouble. The good kind of trouble, I might add. I want people to talk about disability. I want people to ask me questions. I want people to think a little more carefully about their actions towards anyone with a disability. If enough people raise their voices, then the authorities cannot deny hearing us.

I didn’t write this blog to generate sympathy, but empathy, and it is this that gives my words meaning.

Power to the Wheels.

Want to know when the words “wheelchair access” don’t actually guarantee wheelchair access? When you use a powered wheelchair.

In all honesty, I’m not certain someone would choose to use a powered wheelchair over a manual one if they didn’t have to. I’m pretty sure I don’t have to spell this out for you, but powered wheelchairs are significantly heavier, bigger, and bulkier than their manual counterparts, reducing manoeuvrability. They are also far more expensive, and much harder to fix should something go awry.

Additionally it appears to surprise some people that I’m using a powered wheelchair because I need to, and not because I’m too lazy to propel myself, which is an accusation I have faced on multiple occasions. Propelling your own manual wheelchair with the addition of your body weight with muscles smaller than those in your legs is extremely hard work, and I am simply too weak and fatigued to do this, plus the cut and blistered hands and muscle strains don’t appeal to me either. Being pushed around by someone else in a manual wheelchair means that you can’t even go to the toilet without asking someone, and you can’t go out or do anything independently. I decided to sacrifice a little manoeuvrability and money in exchange for my independence, and I do not regret that in the least.

What I dislike about using a powered wheelchair is the way companies are allowed to claim that they have full wheelchair access even if a powered wheelchair can’t be used in their facilities. I cannot count the number of taxi firms that have told me I can’t use their accessible cabs because my wheelchair is too big or cumbersome for their vehicles. On one occasion using the trains, the porter sulked at me because he wasn’t sure whether the ramp they’d provided would take my wheelchair’s size and weight, and he had to fetch another. One of the libraries at university had spaces between the shelves wide enough to take a manual wheelchair, but not a powered one, although fortunately a similar set of books could be found in another, more accessible library. Many accessible toilets and changing rooms are barely large enough to take a manual wheelchair, let alone a powered one. A local shopping centre even decided to replace their broken lift for entering the premises with a thin plywood ramp that doesn’t even look strong enough to take a manual wheelchair, and won’t change this despite me launching a complaint. On one occasion, I was even turned down for a job because their lift wouldn’t accommodate my powered wheelchair, and they weren’t going to adapt to my needs. Whether this is even legal is debatable, but I don’t have the finances to take them to court for discrimination, so they got away with it.

None of this is to say that life in a manual wheelchair is easy; this is far from the truth. Businesses still choose to make themselves inaccessible in general, they face the same problems I do concerning the perception of disability, and sometimes the seats in manual wheelchairs really aren’t comfortable when staying seated for any length of time. It just seems that the world is set up to accommodate some disabilities more than others, which is equally as wrong as any other discrimination against disabilities.