Mission Impossible: Go Shopping.

What might seem to be simple everyday tasks for the majority of the population can become Herculean feats with a malfunctioning body, and one of these things is going shopping.

Most modern supermarkets have excellent accessibility around the store; if not, you could hardly be expected to use a trolley. For one thing, they often provided lower tills so that a wheelchair user doesn’t need a periscope to arrange their shopping on the conveyor belt or successfully pay for their selected items. However, there still remain a few issues for wheelchair users in particular, mainly to do with height. The items on the highest shelves are usually completely unreachable, although I have learned that if I sit staring longingly at an item on the top shelf, someone will come and reach it down for me. The prices displayed below each product are not visible to me on the top shelf, so on the odd occasion I may get a nasty surprise when trying to predict how much something will cost me.

Unfortunately, items on the lowest shelves are also difficult to reach, as the sides of the wheelchair restrict how far I can bend over to retrieve and item, and if I try to face the shelf, my feet and legs get in the way. It’s usually a little more difficult to convey that I might need some help because no one can see my facial expression, although I don’t usually have to wait too long before someone comes to my rescue.

The freezers are perhaps the worst offenders in a supermarket; the glass makes it easy to see each tantalising product, but trying to reach over the lip of the freezer to grab hold of the desired product is almost impossible, and my hands grow cold after mere seconds in the sub-zero temperatures. The freezers higher than this present the same issues as the high shelves elsewhere in the supermarket. I could, of course, ask someone for help, but I’m English, making any face-to-face contact with total strangers awkward and uncomfortable.

None of these things are the fault of the supermarket, and there would be little they could do to improve accessibility without massively reducing the availability of products due to the limited shelf space reachable from a wheelchair. However, I can only wish that other shops would follow suit. There are so many shops out there with even just a small step in the door that means I cannot enter, and pubs are often the worst offenders. Admittedly, since many disabled people take some form of medication, all of which state not to drink alcohol whilst taking those tablets, that you could say they were actually being responsible by being inaccessible, although I’m not sure they’ve ever given the issue so much thought. In many cases, only a small and relatively cheap ramp would be needed to resolve the issue, and they would be able to make more money simply by allowing more people into the store.

Unfortunately, even when shops do have accessible facilities, they may choose to misuse them. I have lost count of the shops I have entered that use the disabled changing room as a store cupboard, and have had to navigate the wheelchair around large boxes and racks of new clothing. I also know a shop in a mall, where accessibility is supposedly prioritised, which has a small platform lift next to the three steps up into the main body of the shop. The lift is entirely blocked off by clothing rails and mannequins, and I can therefore not purchase anything, despite having bought lovely clothes from other branches of the same brand in the past. When asked, staff tend to shrug their shoulders nonchalantly, stating that it “wasn’t their decision”, and that “I’d just have to go elsewhere”. This is naturally frustrating, and also a bit demeaning, although it has probably saved me a lot of money.

The shop owners that do make their facilities accessible not just to wheelchair users, but to all those with any kind of disability or other issue that might hinder their ability to go shopping, will make more money than those without access. Effectually this is a classic case of “voting with your feet” (choosing to go elsewhere if the shop in question isn’t good enough), although this statement is perhaps not the best thing to declare in front of a group of disabled people…

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