To See, or Not to See?

In the past few trips we’ve made into town Jarred and I have noted a shift in behaviour that contradicts my “invisibility cloak” experiences; people are now able to see me. This is a massive breakthrough in the way disability is perceived by society, a bonus that cannot be ignored. Unfortunately, their actions towards me have not changed, and I still experience doors being shut in my face, and people stepping over the front of my wheelchair on a daily basis, even when I’m visible.

At first it confused me why people would do this but then I had an epiphany, albeit the most boring epiphany ever described in all of history. People are impatient.

I’ll be the first to admit that when patience was given out I was at the back of the queue, impatiently tapping my foot on the floor. Given that at the time I wasn’t disabled, I couldn’t even pull my usual trick of skipping an entire queue purely because I’m a wheelchair user. This means that when somebody is walking ridiculously slowly down the middle of the pavement, often weaving from side to side like a driver in the British Touring Car Championship, I have to ignore the urge to use my chair as a plough, and act like I have nowhere to be or nothing important to do.

Although I do earnestly try to be patient, I cannot deny that I find being stuck behind someone driving their wheelchair slowly down the centre of the pavement frustrating too. I know that some people aren’t able to travel quickly, particularly in manual wheelchairs, and I know that I should be far more patient and understanding than I am, but it gives me the pedestrian equivalent of road rage. I refuse to believe that I am the only one to feel this way, especially as I understand the trials and tribulations of using a wheelchair and still manage to get annoyed. This means that, instead of risking being stuck behind a wheelchair user who might be moving slowly, people push in front of the wheelchair to be on their way. Unfortunately for those of us who are able to move their wheelchairs at a faster pace, this results in a few difficulties.

Recently I was in a local shopping centre, and there was a choir performing Beatles songs to entertain the crowd of Saturday shoppers. Not being a huge fan of The Beatles myself, let alone choral versions of their songs, I drove my wheelchair as close to the shop-fronts as possible, moving behind the crowd that had gathered to watch. At the back of this crowd were three women, two of whom upon seeing me approach stepped forward from their position blocking a shop door (where people trying to exit the shop were getting annoyed) into the path of my wheelchair (which made me annoyed), and I swear there was a Starsky and Hutch style screech as my tyres slipped on the smooth floor although it could just as easily have been the choir. The third woman gestured to allow me past, looking particularly smug that she had been considerate enough to do so, and I bit my lip before I said something I knew I’d regret.

I wasn’t invisible, and the acknowledgement of my existence on any level shows that society is progressing towards a more tolerant and inclusive way of life. However it is clear to me that there is still progress to be made, including progress on my account to be more patient with those less able than myself. People like me have to lead by example, so my example needs to change, and that is what I aim to do.

Mission Impossible 2: Get Educated.

Ever since I first became ill I have frequently been advised by doctors to give up my education, right through from my GCSEs and A-levels up until the end of my degree. I was told that it would only make my health worse, and that I wouldn’t get decent grades or even pass. This advice may seem sensible on the surface and for some people it works even when they don’t have any choice in the matter, but I found this guidance difficult to accept from people already with a high level of education and a nice job to boot. I therefore opted to go against what the doctors said, something I would usually be cautious to do; they’re the experts after all.

First and foremost, my academic performance did not suffer significantly as a result of my illness. I passed my GCSEs and A-levels by giving up less important things like attending after-school clubs or workshops out of term time, and when I started university I moved into catered halls of residence so that I wouldn’t have to cook for myself, saving me energy. I would be lying if I denied the satisfaction I felt by proving the doctors wrong, but in all fairness to my GP, he took it lightly and wished me well.

The doctors were right in that my physical health was worsened by my choices. I had no energy to put into the various therapies that people tried to cure me with, and I had far less rest than the ideal. However, as someone who has always become bored quickly, I found that resting gave me time to brood on my situation and I would very rapidly go from restful to depressed. What my education took from me in terms of physical health I gained as a boost to my mental health, by taking my mind off the situation and giving me a positive to focus on. For me, mental illness has always been harder to cope with than a loss of physical health, as there is so little that can be done to relieve the symptoms once a relapse hits. As a result I threw myself into my work with the force of a hurricane, but burning the candle at both ends drained me of any energy I had so quickly that within days I would be back in bed. It took some time before I perfected the balance between the focus on my education to improve my mental health and the rest I needed to maintain my physical status.

There was also one other minor flaw in the medical advice given to me; employers don’t see M.E as a valid excuse to have a weaker education and less work experience than anybody else. There should be allowances for such cases, but then, who would employ somebody that would need lots of time off work due to illness over someone else with a curriculum vitae as long as their arm? Perhaps people like me actually contribute to this problem by falling in line with employer’s expectations, allowing employers to think that if one of us can do it, all of us can. Whatever the case, I decided that obtaining an education was best for me under my own circumstances, particularly because after a certain age even obtaining GCSEs becomes extremely expensive.

Some people seem to think that I’m some kind of badass straight from a movie for going out and getting an education, but the reality is that I used it as a distraction from said reality. The right person could probably make a good argument saying that this was actually an act of cowardice, and I wouldn’t oppose them. Although I did not make my decision to please those who think I’m lazy, it is true that I haven’t exactly stepped out of line with society’s expectations, and the very definition of a badass is someone who defies expectations. Whatever the case I ask people to respect my decision, as education was simply the right path for me, and the decisions of others should not be based on mine.

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…

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.

Image description: a black-and-white photograph of Stephen Hawking in a lab.

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.

Image description: the 3 hosts of The Last Leg. On the left is Josh Widdecomb, Adam Hills is in the centre, & Alex Brooker is on the right.

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.

Image description: Lady Gaga where a black dress with a plunging neckline, and neatly styled blonde hair.

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.

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 manoeuverability. 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 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 manoeuverability 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  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 form of discrimination.

Medal of Honour.

Most people upon first meeting me fall into one of two categories; either I am to be ignored as a blemish upon society’s “flawless” beauty, or I am treated as if the life of a disabled person is so grueling that even existing is something of an achievement. I am not brave because I woke up this morning. I am not brave because I got dressed. I am not brave because I ate breakfast. In fact, I am not brave at all. Anyone who has seen my reaction to any kind of insect or arachnid other than a ladybird or butterfly can confirm this.

One unfortunate truth of living with a currently incurable illness is not knowing if you will ever get better or if you will live the rest of your life experiencing symptoms. Given that Chronic Fatigue Synrdome (CFS) is thankfully not particularly life-threatening and only so in rare and very severe cases, my future in terms of health is a big, blank canvas. I do not know when I will get well, if I recover at all, and I do not know how much life I will have left after recovering, if I have any at all. That would be a daunting prospect to anyone and I would be lying if I said that I did not feel fear of such a future. Frequently I am told that this sort of thinking is pessimistic, but it is not. I’m a realist, and this just is a rather ugly aspect of reality.

Those who have seen me at my very worst, barely able to move in bed and having no interest in food or drink whatsoever, would not say I was brave. They have seen me cry, and they have seen me shake with fear when I realise that this could be my life for a long time. They have seen me withdraw into myself shortly before a medic pokes and prods me and then says that I’m a mere attention-seeker. Everyone else sees me on my better days, when I’m cheerful and upbeat because I’m not in as much pain or as fatigued. They have not seen me cry or shake, and when these people tell me that I’m brave, they have not seen a representative view of every aspect of my life.

No one in their right mind makes the choice to experience chronic, debilitating illnesses. I did not make the choice to face this illness, so why should I be deemed brave for trying to live with a circumstance I can do nothing about? Bravery, for me, is when someone makes the choice to face their fears, or to put themselves in harm’s way to protect others. I have done neither, and so will adamantly deny any bravery on my part.

My wheelchair is not a medal of honour. Neither should it be a setback, or invisibility cloak. It is a wheelchair, and it’s only function is to carry me from place to place because I cannot carry myself.