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 invariably 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.

Nor are wheelchair users are not some kind of evil genii who manage to use their disabilities to manipulate the world around them, going through trial after trial to highlight their “superpower”. While the plot of “Unbreakable” is much more complex than this, and the characters are far more intricate, 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 character’s 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 either warriors or creeps on the silver screen, never just the average-Joe extra who keeps getting their day ruined by the protagonist’s misadventures.

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 afflicted 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 fluidit, 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, it 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 among 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 with 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 beside 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 specifically 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, so 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 I was very happy to see a porter standing outside our carriage as we pulled into the train station in Leeds.

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 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 a plethora 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 goodbye to our family. The sun was still shining as we traveled 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 bypass 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 wheelchair brakes on to prevent any inertia-related 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, as was 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 Kings Cross, where 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 by just to get a photo of it.

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 like role models, 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 Neuron’s Disease, a relatively rare and peculiar condition. He was also involved in encouraging children to pursue the sciences as viable subjects in schools, co-authored a series of science fiction stories that are entirely feasible according to laws of physics, and 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 could not, such as talking with my own vocal cords.

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 shown their 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 own 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 also suffers from fibromyalgia and has had to make difficult decisions concerning touring schedules and public appearances just to manage day-to-day existence. 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 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 to avoid thinking about my own, 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, so 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, will 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. 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 in need of solutions. 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, are 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 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.