Sweet, Sweet Irony.

One consistent occurrence that continues to amuse me on a regular basis is the way different types of people react to the wheelchair, usually spitting in the face of stereotypes and then allowing me to run said stereotypes over. I can think of no better example of this than a situation I encountered recently as I returned home from a night out.

A couple of streets away from my flat there is a new block of posh flats and offices being built adjoining one of the big shopping centres in Leeds, and the scale of the job means that the pavement has been completely blocked off. All pedestrians must use a narrow section of the road cordoned off for them to walk through safely. At points this area is narrow enough for only single file pedestrians going in each direction so as not to impede the traffic on the main road, and occasionally this can cause difficulties for the wheelchair.

It was a Saturday night and all the clubs and pubs were overflowing and spilling out onto the pavement. Among these was a group of tipsy students, all male, who were staggering through the improvised path towards us. I was more than prepared to pull over to one side at a wider section in order to let them past, as their movements indicated that perhaps they weren’t fully in control of their actions. To my surprise they stopped and stood to one side to allow me and Jarred past. As I went by them I thanked them, which was greeted by a series of cheery, if slightly slurred, greetings.

Jarred and I made it round the path and back onto the pavement without too much trouble, and we carried on towards our block of flats which was visible from the road. Ahead of us I spotted a large group of charity workers ambling slowly along the pavement, pulling large carts behind them full of meals for the homeless. We came to a crossing where they blocked the lowered kerb that allows me to cross the street safely. By the time they had moved more traffic was pulling onto the street, and I had to wait before I could cross.

We crossed the road, reaching a narrow pavement littered with lampposts and traffic lights. Here the group of charity workers had stopped again, despite the fact that around the corner, mere metres away, was a wide expanse of pavement perfect for stopping on. They had blocked the entire pavement, not just for my wheelchair, but for all pedestrians who were having to step down onto the road to get around them. As I couldn’t step off the pavement I had to persuade them to let me past.

It took two attempts for Jarred to convince them to move the first of the carts so that I could get round; they completely ignored me altogether. The second cart proved just as difficult and the final cart refused to move at all. As I squeezed past my wheels knocked the cart, for which I was tutted at (coincidentally the only interaction I received with them). The group apologised half-heartedly to Jarred, clearly believing us to be rude, thinking that their undeniably kind actions towards the homeless alleviated them of all other responsibilities.

These two encounters had happened maybe 100 metres apart, if that. Yet it was the drunken lads who treated me as their equal, with kindness and generosity, while the holier-than-thou charity workers treated me as if I was dirt on the bottom of their shoes. The irony of this situation was not lost on me; the people who are poorly misrepresented in the media, and who are blamed for all the troubles of society, were the ones to do the responsible thing. The people who will be hailed as heroes for their acts of incredible kindness and dedication didn’t care for anything but the fact that they were seen to be helping the homeless while I had selfishly been eating in a pub on a Saturday night.

This is yet more evidence in support of my prevailing theory; that kindness often comes from those you least expect it from.

One Good Turn.

It was a dismal day in late October and the drizzle had soaked me from head to foot as I traveled into town. The light was fading quickly and the temperature falling even faster. There was little doubt in my mind that the first of the winter’s frosts would develop overnight.

I turned left onto a bridge crossing a main road. People were passing across the bridge in droves, it being one of the busiest routes in and out of town for pedestrians. To one side, huddled beneath the railing, was a homeless man. His thin and worn blanket gave little protection against the cold and every possession he had was dripping with rain water.

Nearly everyone on that bridge saw the homeless man and nearly everyone carried on walking anyway. I’m sure they had their reasons. However, for whatever reason, I just couldn’t go past him and leave with a clear conscience.

I had a flapjack in my handbag which I’d been planning to eat upon returning home. I reached into my bag and handed it to him without making a fuss. It wasn’t a big deal; he had far more need of it than I did. He looked up and thanked me with such genuine compassion it took me by surprise. We exchanged a few short sentences and then I set off again, thinking nothing more of the matter.

A couple of months later I was at a Christmas event serving free mulled wine and mince pies, which was inevitably crowded. Among those in attendance were several homeless people, who the staff welcomed along with everyone else.

I was struggling to navigate through the crowd, most of whom completely ignored me if they were even aware of my presence at all. I came to a heavy door, which I struggled to hold open as I tried to pass my wheelchair through the narrow gap without hitting anyone. Clearly someone had noticed my predicament, because I felt the weight of the door taken off my wrist. I looked up to thank the person holding the door open for me, and to my surprise and genuine delight, I recognised the homeless man I had helped before. He simply said “one good turn deserves another”, and then he was swallowed up by the crowd.

A couple of years later I was sat in a bar with a good friend, when the same homeless man walked past us and nodded at me. Naturally this led to me explaining what had happened. When I’d finished speaking, my friend laughed and called me “the Good Bradfordian”, à la the biblical parable.

***

When I was a child attending Sunday school the parable of the Good Samaritan had always confused me. It seemed to me to support basic racism because we are repeatedly told that certain passers-by were expected to help, and that the Samaritan wasn’t simply because of where he was from. I didn’t understand why being Samaritan excluded you from the expectation to help, nor why being from elsewhere guaranteed your help.

Similarly the story also suggested that it was a good idea to help people because you would be rewarded, and the richer the rescued person was, the greater the reward. I failed to grasp why a motivation to do the right thing would be needed, instead believing doing the right thing to be the reward itself.

I expected no reward for being the one who did the right thing. Why should I? Just because I’m from a stereotypically rough city doesn’t mean I can’t help others and have no compassion for them, and neither does being disabled. I am almost certain the homeless man expected no reward for holding the door open for me, and probably failed to understand why others wouldn’t help me either. I would hope we would be in mutual agreement upon this matter; it is simply a shame he may never get to read this.

Truly Grand.

The telephone in my grandparents’ house started to ring at 7 am on the Sunday of a bank holiday weekend in 1996, and grandad had the responsibility of the answering the call. Once he’d established that it was his son-in-law on the other end of the line, he said;

“You had a baby girl last night, and called her Emma Jane, right?”

Apparently he’d had a dream overnight in which I was dragged into the world from my comfortable abode, and almost immediately mum had given me a name, which is apparently pretty much what happened. I still don’t think that dad has forgiven my mum for that one; he didn’t get so much as a look-in.

Almost 17 years later grandad was taken into hospital, where it was established that he had a rare and particularly brutal form of cancer, which had remained undetected for many years. Because of this the cancer had already reached the final stage of its development, spreading throughout the body. No medicine could help to reverse the growth of the tumours, instead merely slowing the growth of the cancer and reducing the symptoms. It was a death sentence.

A couple of years passed and grandad remained in relatively good health considering the severity of the cancer. I visited him and grandma with my parents whenever I could, and we spent many happy hours sat watching TV game shows, shouting out the answers, and laughing at each other when we got them wrong. We would eat tea together, listen to music, and one particularly memorable time we dug out lots of old photographs of my mum and my aunt as children, complete with questionable 80’s fashion choices.

Eventually the cancer began to take a visible toll on him. He ended up in a hospice for a couple of months one winter, and after another few months at home where he was visibly weaker, he was taken into hospital. Eventually he was moved into a care home where he had 24 hour access to nurses and carers as he was almost completely bed-bound, and needed help with most basic daily tasks.

The care home was not as detached and miserable as many people might assume; the decor was warm and homely, and the staff were very friendly. There were plenty of activities for him to participate in should he so desire, including a beautiful German shepherd trained as a pets as therapy dog that he absolutely adored. From his room he could even see the wind turbines that stand on top of the Pennines in the distance.

The illness clearly caused issues for him; he was in almost constant pain and struggled to eat and drink. Regardless, whenever I went to see him he would always ask how I was doing. He was proud of my achievements in education and encouraged me to continue with my work in spite of my own illness. He somehow kept a friendly and positive attitude, and managed to genuinely care about others in a situation where many people simply retreat into themselves and lose interest in those around them. It may sound clichéd, but his attitude to life in the face of adversity has helped me to shape my own actions.

The last time I saw him he was so weak that he could barely hold his eyes open, and his speech was a quiet, almost incomprehensible murmur. I could see he was tired as he had already had a lot of visitors that day, but he still made the effort to inquire about my life. Before I left I squeezed his hand, which had been hanging limply off the side of the bed.

Over 20 years after that initial phone call, on the 20th December 2016, I had a dream that grandad had gone in the night. When the phone rang mere minutes after I woke up, much like grandad so many years before, I didn’t need to be told the news.

Ernie.png

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.

The Writing Days.

After completing my degree at the end of May, I’ve had more time on my hands than someone wearing 15 watches at once. Instead of being the supposedly stereotypical Millennial who doesn’t lift a finger for three whole months, I’ve put a lot of my time into watching movies, which requires lifting a finger to press buttons on the remote. I’ve also been doing some writing on the side.

Contrary to popular opinion, writers are not always lazy slobs. To prove this I decided to write about what writing for a blog, an international magazine, and also working on other (top secret) projects is actually like on a day-to-day basis.

Given that I have no set time when I am required to start work it shouldn’t come as a surprise that I choose to wake up naturally, which usually occurs between 9 and 10 am depending on my alcohol consumption the evening before. Jarred usually wakes up far earlier than this and by the time I wander sleepily through from the bedroom to the lounge, he’s often been playing either Skyrim or Fallout 4 for over an hour. The kettle goes on, and while I wait for it to boil I’ll take my medicine and grab some cereal. I’m nice, so I make Jarred a coffee as well as myself.

While I eat breakfast, we’ll switch to my profile on the games console, and Jarred will control my character while I boss him around. Once we’ve completed whatever mission we were doing, I get washed and changed into something comfy, and then drift back through to the lounge and allow Facebook to bombard me with notifications. At this point, I also like to browse through the latest articles on my favourite magazines, which I prefer to call “research” rather than “procrastination”.

Lunch is usually a sandwich and some fruit, along with sparkling water and some unladylike belching. Immediately after lunch I’ll pack my laptop bag, hop into my wheelchair, and take the 5 minute journey to my favourite coffee shop that I can actually get my wheelchair into. I roll up to the counter where they see the top of my head only, and the barista greets me by name.  They then ask if I want a regular Americano with milk bringing to my table. Perhaps I ought to take this as a hint that I spend too much time in this particular café, but I’m a creature of habit.

Fuelled by the sudden caffeine rush I begin to type. Half the time I don’t think I’m even aware of the words appearing on the screen in front of me; they just materialise. An hour or so later I’ll come out of my trance, and return to the counter for re-caffeinating purposes. Then it’s back to work.

As 5 o’clock approaches I bring my writing to a close, bring my laptop to a close, and head home. I start to prepare dinner, which is usually something simple like a stir fry. Then I leave the dish washer (a.k.a. Jarred) to do my literal dirty work while I browse YouTube.

Once all the pots are clean and away, the evening relaxation after a hard afternoons’ work begins. This might entail a hot bath including bath salts and a rubber duck, watching films, or playing board games. While I nearly always lose chess and Risk, being a writer gives me a distinct advantage at Scrabble. By 10 o’clock I’m usually capable of 4-letter words only and my Scrabble prowess begins to decline. Then it’s a case of taking medicines, scrubbing my teeth, and crawling back into bed for another 11 hours. Repeat.

The Final Student Day.

On the 17th July 2017 I woke to sunlight streaming between the slats of the Venetian blinds, and was about to turn over and go back to sleep when the alarm started. I wondered why I had put an alarm on for a Monday morning when I wasn’t working, and it took me longer than I would care to admit to realise that it was graduation day. Mornings were never a strong point.

Jarred and me made it onto the university campus by 10 am, and immediately went into the union to collect tickets for myself, my parents, and an additional one I had got for Jarred as he was my “carer” for the day.

Then we wandered through to the back of the union to collect my graduation robe and hood. A porter was directing people to the correct rooms depending on whether they were taking or returning robes, or  were going to watch the graduation ceremony live via a live-stream. Without asking first, the porter directed me towards the room for watching graduation ceremonies. Surely someone in a wheelchair couldn’t possibly have obtained a degree?!?

“I’ve just been awarded a first class degree with honours,” I said in a matter-of-fact tone, “and am here to graduate.”

The look of surprise on his face was akin to the expression people wear when I tell them that my disability originated from meningitis; somewhere between Taylor Swift and brain-dead.

“Oh…” he eventually stammered, “then you need to go into this room please.” He ushered me into the robing room.

Putting on the robe was something of a calamity. Long, flowing material has a tendency to become entwined around the motors and wheels of my wheelchair, and I had to be careful not to get it tangled in the seat belt (most wheelchairs have them, I’m not just a really bad driver). As I came out of the robing room the porter looked so sheepish that I was surprised not to see a yellow anti-sheep-theft tag dangling from his ear.

After greeting a few of my friends and course mates, Jarred and I went to meet my parents. Another period of awkward small talk in the midst of a crowd ensued, and then we were being shown into the Great Hall.

The front of the stage in the Great Hall was weighed down with ivy more plastic-looking than Nicki Minaj’s rear end, and the flowers weren’t much more organic either. I was given a seat on the front row, allowing me quick access for the lift onto the stage when it was needed.

Once everyone was in the hall and seated in the correct places, the next half an hour was spent clapping almost incessantly. I felt akin to a seal trying to earn an extra fish off its trainer. When I wasn’t clapping, I was high-fiving my course mates as they went past upon returning to their seats. Soon, my hands were red and tingling, and given the warmth of the day whilst smothered in black robes, they were sweaty too.

My surname means that I am always towards the end of any such procession, so it was quite some time before another porter was helping me into the lift, ready to ascend to the stage. For the most part the clapping hid the droning noise as the lift hauled me up onto stage, but one awkward silence between clapping while a name was read out was broken by the noise of the lift. Fortunately it had solid sides, so I don’t think anyone noticed my face-palm.

The porter opened the lift door at the top and my name was called. I drove across, positioned myself for the obligatory photo, collected my certificate, and returned to what I presume was the loudest lift in the entire world.

Recieving degree.jpg

After the ceremony came the free lunch, which was the reason why so many family members had attended, and photos of the whole year group were taken. Then I was driving around, finding as many of my friends and lecturers as I could, posing for photographs, giving well-wishes, and saying goodbye to those I wouldn’t see again.

Once I had done all I needed to I returned the robe to the sheep-porter (still looking sheepish), and meandered back home through the city centre. In the blink of an eye it was over, I had a degree, a huge student loan to pay off, was no longer a student, and was now expected to act like a proper adult. For all the happiness of achieving what I had, there was also a little sadness that it had come to an end.

Mike and me.jpg

Mum’s left foot is doing the disabled equivalent of a photobomb…

The Student Days.

It’s only after I’ve been writing this blog for several months that I’ve come to realise that I’ve never actually discussed what I do on a day-to-day basis. Admittedly the “day in the life of” trope is somewhat clichéd and overused and since my daily habits have changed drastically over the past few months, it’s a little difficult to give an accurate representation of what I would deem an ordinary day right now. Therefore, I’ve decided to write what an ordinary day entailed as a disabled university student, and in the future when my routine has settled down, I may be able to tell you what life as a disabled employee is like.

The alarm clicked into life at 7 am, and the sounds of Planet Rock slowly pulled me back to the land of the living. A few minutes later I would feel the bed springs move underneath me as Jarred hauled himself out of bed, while I remained immersed among the sheets. The kettle was switched on and I gradually sat myself upright while Jarred prepared breakfast, which he insisted on bringing me while I was in bed (although I didn’t exactly resist). While we ate breakfast, Jarred read the news as if he were in a 1950’s sitcom with a futuristic twist; the news was on his phone.

20 minutes, 1 cup of coffee, and a bowl of cereal later, I finally forced myself to leave the warmth of the bed and wandered over to the medicine cupboard. I’ve got into the habit of swallowing all the pills I have in a morning in one gulp to save time and very occasionally one would get stuck on my tongue, leaving a bad taste even after I’d brushed my teeth. After a quick wash I got dressed, usually jeans and a sweater or t-shirt, brushed my hair, applied a little make-up if I could be bothered, and pulled on my trainers.

At this point I often sat down at my computer and caught up with all the emails and messages that had accumulated overnight, and then I would nip across to the union to pick up something for lunch.

Lectures often started at 9 am, perhaps 10 am if I was lucky, and the rest of the morning was spent moving between different lecture theatres, writing down my notes as quickly as I could, often compromising on legibility in the process. If I didn’t have lectures in the afternoon, I was meeting with team mates for group projects, meeting with my supervisor for my dissertation, or working in the laboratory. The time often passed quickly while I was kept occupied, and I relished the experience.

By late afternoon I was usually pretty tired so I would go home, ditch my books and bags on my bed, and head back to the canteen for something hot to eat, reuniting with Jarred in the process. After eating whatever was on offer that night and catching up on how each other’s days had gone, Jarred and me would return to my apartment, where I would write my lecture notes up neatly. Longer tasks like researching and writing assignments, or things for group work, I would complete at the weekend when I wasn’t as tired.

I had usually finished my work by 8 pm in the evening, when I would have a warm shower, most of which was spent washing my ridiculously thick and frizzy hair, before pulling on the comfiest pyjamas possible and crashing in front of my favourite YouTube channels alongside Jarred. If we were feeling particularly silly,we would play Snakes and Ladders with all 6 counters that came with the board, adding an element of strategy by having to think about which piece to move to avoid the snakes and put ourselves in a favourable position for the ladders. By 10 pm I was often yawning every thirty seconds, and so I would have my evening medication (which was too numerous to take in one gulp) and clean my teeth, before crawling back under the sheets. It always takes me quite a while to go to sleep, and my student days were no different as I stared at the digital clock face blinking the seconds away before I had to do it all over again.

Such a routine might sound a little dull, tedious even, and I cannot honestly claim to have enjoyed every single minute of it. However, it is undeniable that every single one of those minutes was worth it because the rewards were simply too great to be overshadowed by anything.