Movie Magic.

I’m a huge nerd (surprise), and practically wet myself whenever a new Marvel or Star Wars film is released. 2018 alone should be enough to dehydrate me, and I’ll be spending so much time in dark rooms watching films that I’ll probably develop rickets to boot. I already use a wheelchair, so it’s not like this matters exactly.

One of the best things about being disabled is that I can get a friend into the cinema for free as my carer. Then I receive a student discount on my ticket, and I use my handbag to smuggle snacks into the cinema like the badass gangster that I am, saving us even more money. I’ve often spent less than £10 going to see the latest blockbuster at peak times, making trips to the cinema with friends and family frequent occurrence. The local cinema is highly accessible, with modern lifts, smooth floors, open spaces, and spaces for my wheelchair in every room, rendering it a safe bet for a good night out, particularly when paired with a trip to the pub afterwards. It’s clean and warm, and laughing at the antics of Deadpool or Star Lord in the company of like-minded people is always a pleasure.

A couple of years ago the film about Stephen Hawking was released, and naturally I was interested in seeing the life of one of my roll models (sorry) depicted on the silver screen. I went to see it with my best friend, and we both thoroughly enjoyed it. However, I couldn’t help noticing that as the lights came on and people filed out of the cinema while the credits rolled, that the majority of them would give me sympathetic looks despite having spent two hours exploring patronising attitudes to disability. Sat in the pub afterwards holding a drink in my gloved hands, this made for amusing conversation, and the irony of the situation was not lost on me.

I know I’ve mentioned the fact that being in a wheelchair means that I can go and see kids’ movies without judgement, and the same applies for arriving at the cinema draped in Star Wars paraphernalia, and squeaking whenever BB-8 made an appearance. On the way out, I couldn’t help zig-zagging from side to side while emitting “pew, pew, pew” noises, pretending to be an X-wing as part of The Resistance, and not one other movie-goer batted an eyelid. I must also admit to occasionally using my walking stick (which is glittery because if you need to use a walking stick, you might as well make it a stylish one) as a lightsabre around the flat, doing my best to imitate the infamous sounds while Jarred buries his head in his hands in despair. My father taught me well…BB8.jpeg

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…

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.

Ignorance is Bliss.

Despite having reproduced for millennia, humans continue to marvel at the mind of a child, and the way it tries to piece together the coalition of chaos that is life. This often provokes brutally honest, and usually quite amusing reactions to social situations, which arise from the ignorance of complex societal norms created by adults with the sole purpose to make other’s lives as miserable as our own. Their views on disability are no exception to this, and in particular, young children will not treat someone in a wheelchair differently to someone who can walk. They also occasionally think we’re mermaids (https://diaryofadisabledperson.wordpress.com/2017/06/10/the-real-mermaid/).

One summer, I was browsing the isles of the local supermarket searching for a birthday present when a little girl with blonde pigtails and big blue eyes tottered round the corner, almost into my wheelchair. She stopped and looked up at me, before asking in earnest;

“Are you poorly?”

I smiled and confirmed this.

“Will you get better though?” she continued.

“Hopefully,” I said in reply.

“And you’ll be able to walk like me?” she asked.

“Absolutely,” I returned.

Throughout this exchange, the blonde woman who I presumed was the girl’s mother looked utterly mortified, and desperately tried to coax her daughter away. I looked up at her, smiled, and said it was absolutely fine. I would much rather children ask the questions they want to ask instead of staring silently at me, so as to break the taboo surrounding disability. Children are remarkably robust when facing the negative aspects of life, and are rarely as perturbed as we might have assumed. As such, disability and sickness should not be hidden from children, as it is simply a part of real life.

Sometimes, children have wonderful reactions if they see that the adults they are with block the path of the wheelchair. In many instances, children have pulled prams, bags, baskets, or even the adults themselves out of the way, allowing me to pass safely. On a good few of these occasions, the adults have even received a ticking off from the children. My personal favourite occurred after a distracted mother let a door swing shut in my face. Her son, a boy of maybe 6 or 7 years old, came back and held the door open for me. His mum called out for him to stay with her in a somewhat irritated tone, and in response the boy told her he’d only tried to be nice, as she had taught him. He then attempted to say it was “hypocritical” without much success, which fortunately broke the ice, and the mother relaxed and apologised.

At other times, it has been me who has been the first to speak to a child if the situation calls for it. I remember on one occasion I was in the local park, and a girl was riding her scooter down the hill much faster than her dad could walk. Unfortunately, the front wheel of her scooter got caught in a rut in the pavement, and the girl went headlong over the handlebars, landing heavily in a messy heap. The closest adult to the fall didn’t bat an eyelid, and walked past almost as if they hadn’t seen or heard what had happened. As the next closest adult, I went to the child to check she was OK, and handed her a tissue to wipe her tear-stained cheeks. Her injuries were very minor, superficial scrapes to the skin, but the shock of the fall seemed to be what had upset her. I remembered doing almost exactly the same thing ten years before, on another hill within the same park, and said as much which made her smile. Seconds later her dad arrived, almost out of breath from trying to stay upright on the slightly slippery path. He smiled, and they both thanked me, before we went our separate ways. It was not that a disabled person had stopped to help that required gratitude, but the fact that a person had stopped to help at all, and I fully believe that they would have spoken to anyone else in exactly the same manner.

The ignorance of these children towards the taboo surrounding disability did not bring bliss to themselves alone, but to me as a disabled person, and I can only hope that as they grow and develop, that their inclusive attitude is unmarred by the loss of their ignorance.

Midweek Cringe-Fest.

So I was digging through some old notebooks that my parents had kept and then brought to my new apartment, and I found these two beauties. Bear in mind I was in the middle of puberty, at the peak of awkwardness…

The children smile,

They don’t discriminate,

Very few decide,

To gawp and gape.

 

I’m not so different,

As you’d like to think,

If I may be blunt,

I’m not thick.

 

Please don’t stare,

What if I stared at you?

I’m in a wheelchair,

Not an animal at the zoo.

 

I’d like to say,

That life is fine,

I’m free of pain,

But that’s a lie.

 

I’m not gonna mope,

Though I’d love to cry,

Is there any hope?

Will M.E say goodbye?

 

Please don’t stare,

What if I stared at you?

I’m in a wheelchair,

Not an animal at the zoo.

 

The children smile,

They don’t discriminate,

Very few decide,

To gawp and gape.

Complete with badly drawn wheelchair:

Wheelchair.png

A couple of months after writing that first one, I wrote this:

A giant hoover came out of the sky,

And sucked all my energy away,

Then came the lead weights tied to my limbs,

I have to pull them night and day.

 

I lie awake in the night to find my sleep stolen,

Right from under my nose by a robber,

Unrefreshed, unhappy, and unrested,

Why should I even bother?

 

It hasn’t got better, it hasn’t got worse,

At least I know where I’m at,

I feel so small, so insignificant,

In the wheelchair in which I’m sat.

 

But at least I’m sure of two things in life,

Two things it has taught me so well,

I know for sure who my true friends are,

And not to take them for granted, even if I’m unwell.

Let’s just say that I think my writing skills have improved since then…

Pimp my Ride 2: The Outfit.

If you’ll pardon the expression, there is another way to stand out as a wheelchair user besides decorating the wheelchair itself, and that is the way in which I decorate myself. I have always loved clothes, and it is rare that I am able to resist the tempting call of a sale rail or charity shop bargain. You don’t need to be rich to be stylish.

Showing personality can be as simple as wearing a graphic t-shirt, like a band or film t-shirt, immediately showing the world a little bit about yourself and your preferences without having to say a word. It gives people a way of talking to me that doesn’t immediately concern the wheeled contraption beneath my behind, and that can make social situations a great deal less awkward. When I went to see an amateur production of the stage musical American Idiot, no one had to ask why I would want to see the production simply because my beloved Green Day t-shirt spoke for me.

American Idiot.jpg

Of course, I would hardly be able to go to a job in such an outfit, but formal attire doesn’t have to be dull either. One of my favourite items of clothing is a red skirt with black dots all over it, which I have affectionately christened the “ladybird skirt”. It’s bright and cheerful, and when I wear it I frequently receive complements about my sense of style. Paired with a linen blouse covered in large, black swirls, I look as ready as ever for any work situation, even if the blouse did come from a charity sale.

New shirt.JPG

Colour coordination is another simple trick I use to draw attention away from the wheelchair. Pairing black jeans with roses on the hips with a plain black top, studded belt, and red scarf is simple, but effective. With Jarred following me around like a lost puppy, I knew that was an outfit that I had thought out well.

Rose jeans.JPG

Even evening wear does not have to lack personality as a wheelchair user, although admittedly long, flowing gowns would only become entangled around the wheels and motors on my chair. The little black dress is a timeless classic, and is suitable for most occasions too. Paired with a little colour in the tights, I manage to give the dress a slight twist.

Bond Girl

I also own a leopard print dress, and another black dress, this time with silver sequins on the skirt. Both of these always seem to make people smile when I wear them, and I am told that they suit me well.

Model.jpgGlamour.JPG

None of these outfits have ever left me out of pocket, but flamboyance leaves people easily fooled. Before I begin to sound as if this was merely an excuse to show off the few photographs of me in existence that don’t look weird or dorky, I will say that the way I dress does actually have a purpose. It informs people that I am more than a girl in a wheelchair. It tells people that I am a human, with likes and dislikes, and that I can make choices for myself. I find that a little character goes a long way as a social outsider, and anything that helps others to feel less awkward towards disability can only be a good thing as we move towards equality.

Dalek Days.

Daleks first petrified Doctor Who fans in the early 1960’s, and quickly took on pop culture status with their inhuman features and grating speech, mostly gaining notoriety for the simple tactic used to defeat them; climbing stairs. Of course, when they gained the ability to levitate in the 1980’s, people watched horrified as the Doctor and his companion realised that they could no longer rely on their usual trick of running up the stairs. I remember watching the tense episode in 2005 when the Daleks once again demonstrated their gravity-defying abilities, and 9-year-old-me wondered just how many hair driers were needed to enable to Daleks to do this.

Dalek

Unfortunately, it appears that some people cannot comprehend the fact that Doctor Who, including the Daleks, is entirely fictitious. I say this because it seems to me that I am often equated to Daleks as a wheelchair user, or so the look of fear on people’s faces when the disabled person talks to them suggests, and they assume that wheelchair users also have the ability to levitate. Therefore they see no problem when a lift or ramp is obstructed, or when there is simply no lift or ramp as well as a flight of steps, and they wonder why I am frustrated or upset.

When I’m out and about, I often find cars parked over the area of the pavement sloped to the level of the road. While prams, bikes, and even a small manual wheelchair might be able to cope with a small drop of a few centimetres, a powered wheelchair is just too heavy to risk such a manoeuvre, not to mention the fact that it’s actually quite painful. If the driver is even in the vehicle, the usual response to my predicament is to be told that the car will only be there a minute, but of course when I round the corner and find another vehicle doing the same thing for the same reasons, it could end up taking half an hour to travel what is only a five minute amble. I deal with this by setting off ridiculously early for every appointment I have to make, so that if I face an obstruction I can find a route around it, but I still sometimes end up late.

I also have to be very careful when trying out new venues for the first time; I’ve been told to meet someone in a pub who knew I was in a wheelchair, to find a 5 cm stone step in the doorway, and no ramp available. The solution suggested to me was to drive up to it a bit faster, have someone push the wheelchair from behind, or to climb out the wheelchair and have someone carry it inside for me. Any of these could have damaged the wheelchair, which costs the price of a small, second-hand car, and I knew that my insurance policy would not cover any damage inflicted by these tactics. I chose to vote with my wheels, feet would be the wrong word, and went to other pubs that didn’t require you to complete a Paralympic event to get a pint.

I understand perfectly why the pre-levitation era Daleks had a somewhat grumpy temperament, as I only wish to complete a degree and get a job, never mind world domination (that will come later). Now, of course, I have a little less sympathy for them, although admittedly fighting with such ignorance on a daily basis is highly irritating, and I wouldn’t blame them for bearing a grudge.

It has been suggested to me that I should dress up as a Dalek for Halloween, but unfortunately while I have a creative imagination, my abilities to physically produce my creations are the equivalent of a drunk elephant squaring up to a mouse. I also don’t own a whisk or sink plunger, which is rather the set-back.  Instead I will have to rely on the simple phrase “I’m not a Dalek”, and spend my money in the places that have had the wherewithal to spend their money on providing wheelchair access to enable me to spend my money there.