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…

GETting Nowhere.

Chronic Fatigue Syndrome (CFS) is one of those strange conditions that has no real treatment protocols assigned to the disease, mainly because so little is known about it, but also because the symptoms are so variable that one treatment won’t work for everyone. Aside from various painkillers, anti-sickness medicines, and sometimes antidepressants, most treatments for CFS aren’t actual medicines. One of these other treatments is Graded Exercise Therapy (GET).

GET is a process where a low level of exercise is performed every day and the level of exercise increases at regular intervals, until the patient is able to undertake normal everyday exercise. This is particularly useful for injuries such as damaged bones, muscles, or tendons and ligaments, allowing the tissue to gradually repair itself and return to its former healthy state. However I have yet to figure out how GET helps CFS sufferers, which is now believed to be an autoimmune neurological disease of the brain and spine. All the same countless CFS sufferers are subjected to GET, myself included.

I started GET in October 2011; at this point the CFS wasn’t particularly bad. I was able to walk, albeit slowly, around most places, and if I rested regularly I was able to live a relatively normal life. The physiotherapist at the local hospital was bubbly and friendly and we had an in depth discussion about my current level of activity, and which symptoms impacted me the most. She then observed me doing a few basic exercises included step-ups and star jumps, and counted how many of each I could perform before reporting a flare up of my symptoms. I was then assigned a certain number of steps, step-ups, and star jumps to do daily, increasing each a little every week. This process ignored one vital factor though; what I could do as a one-off is not the same as what I could manage on a daily basis.

I started the exercises the following day and for the first few days it went swimmingly. The problems started when I had to increase the exercise; my legs burned with every additional step-up and the star jumps repeatedly jarred my back, which was one of my most painful symptoms. We contacted the physiotherapist; I was told to work through the pain barrier. For some strange reason I thought the professionally trained and experienced physiotherapist would know what she was doing and so I stuck to her advice. The pains got worse with each session and I needed more resting periods. The fatigue grew until it felt as though I was wading through treacle with a lead weight tied to my neck. Even the few steps I had to walk became pain-ridden and exhausting. I carried on regardless, sure that one day I would pass through the pain barrier as I had been promised.

A few months later I returned to the physiotherapist far weaker than I had been before. Apparently I just wasn’t trying hard enough. I was advised to buy my own wheelchair but not to become dependent on it, using it minimally. This was the point at which I became skeptical; I hadn’t needed a wheelchair before and now I did, but I was told that the GET wasn’t responsible. However, I was desperate for something to make me better instead of worse and since this appeared to be my only chance, I continued.

A matter of weeks later I had to stop. Just rolling out of bed was an exercise in itself, and the stairs were more like an Olympic sport than a mode of getting around. I needed the wheelchair more and more and more. Despite stopping the GET I continued to get worse for about a year; once on the downward spiral, there was nothing to stop myself from falling even further. I ended up where I am today; able to walk around a small apartment for the most part, but needing my wheelchair for everything else.

At first I blamed myself for what had happened. Maybe if I’d tried harder the outcome would have been different. Maybe I was just weak and pathetic. However, when I look back on this, I consider it to be no coincidence that everything went to pieces when I started GET. It might not be entirely responsible for the outcome, but it was the trigger. My naivety towards some medical professional’s attitudes to CFS didn’t help, nor did my inability to respond to the symptoms quickly enough, but I consider myself to be relatively free of blame. GET certainly has its place in modern medicine, but not to treat CFS, which is just too complex for so simple a treatment.

The Disadvantage of Benefits.

Just about every day there is a story in the news about benefits, the money provided by governments to disadvantaged individuals to help make ends meet. The story is usually one of three; a huge fraudster has been caught, someone who clearly needs and deserves the help can’t access it, or benefits to one group of people are being cut yet again. Perhaps my view of these matters is biased but more often than not, the benefits in question are related to illness or disability.

If disability fraud is irritating to the average tax-payer then it is soul-destroying to those with genuine disabilities, because every time one of these stories hits the news you might as well draw a huge target on our backs. The pointing fingers and groundless accusations pile up all too quickly; I can feel total strangers staring at me, and hear them making snide comments when they think I’m out of ear-shot. On a national level, the pressure to make the thousands of disabled people accountable for the crime of just one leads the government to introduce yet more cuts. As with any budget cuts those subjected to them are put through intense stress and anxiety.

During the recent period of cuts in the UK I spent most of my days with a tiny, niggling thought lingering at the back of my mind that I couldn’t get rid of, like an itch somewhere I couldn’t reach. What if my money got cut? Cutting my payments would mean I could no longer afford monthly payments for my wheelchair, and being able to access one through the NHS is pure myth. Even if I did manage to sit through the months of waiting for a referral to the specialist, they would give me a cheap manual chair that I couldn’t push myself, and since I don’t receive any money towards carers I would be housebound. Let’s just say my mental health took a turn for the worse and I know that in other cases, suicide becomes a seemingly viable option.

There is a misconception that Personal Independence Payment, the disability payment scheme in the UK, is money given to disabled people to buy essentials and pay the rent. Personal Independence Payment is there to help people afford carers or equipment to give them enough independence to be able to get a job to pay the bills. I cannot afford to sit idly at home all day living off my benefits; I work, but I need my wheelchair to be able to work. Removing my benefits would simply put me out of work, costing the state even more in the long run. It hardly fills me with pride that I need what essentially boils down to sympathy money from a government I disagree with on just about everything, simply so I can have a life.

I know that many strangers see the wheelchair and immediately think “unemployed scrounger”. I could stop and tell these people the truth. I could let them know that they are wrong and that they are prejudiced and discriminatory too. I could ask them why they didn’t have better things to do than judge someone for having some time on their hands. However this would require them to speak to me first to tell me what they thought my wheelchair represented, and these people would never speak to someone they assumed to be a fraudster. They would also, ironically, take offense to the fact that I read their expressions and assumed that they were thinking these things. It would serve no purpose.

Writing it down, on the other hand, doesn’t require someone to initiate the conversation first…

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…