Tag: Equality

Let Me In.

Nothing makes me feel quite as degraded as waiting outside to be let in like a dog. Cats get better treatment than disabled people in this regard, given that wheelchair-flaps aren’t really a thing. If separate entrances for different genders & ethnicities is considered archaic & discriminatory, why does this not apply to disabled people?

I would love to know just how long I have spent outside, often in the cold & wet, waiting while whoever I’m with goes inside to attract the attention of a member of staff, to be directed to the right member of staff, who will then leisurely collect the keys & meander over to the accessible door to let me in. There is never a sense of urgency; other customers who had the luxury of being able to enter the premises of their own accord taking priority, & when the door is finally opened to let me in, I am expected to be beyond grateful for their unwarranted kindness. I’ve even heard members of staff complaining about having to let someone in because it’s such an inconvenience for them. Given the hardship it brings them you’d think someone would have tried to come up with a solution such as making the accessible door the main door, or making the main door accessible. Alas, it is always me to blame for wanting to leave the house every once in a while.

On a few occasions I have challenged the system of making a wheelchair user wait to be let in. Every single time it comes as quite a surprise to the staff that the system is anything less than perfect. To be fair the staff usually report the issue to management, but invariably I get an excuse about budgets, the building being listed, or even something to do with my personal safety. Yes, apparently waiting outside in a dark, dingy alley in the cold, on my own, was for my own safety.  Had I not already been, I would have had to sit down in surprise.

By far the most infuriating defences though, are the most the insulting. I am often informed that it actually isn’t ableist to make the disabled person wait outside while everyone who isn’t disabled can go about their business unimpeded, & clearly I, as a disabled person, don’t understand the meaning of ableism.

Similarly, “Well, at least we’re accessible (¯\_(ツ)_/¯)” is commonly encountered. Much like myself, this excuse doesn’t stand up when scrutinised. Chances are, for those living near cities at least, there is a more accessible competitor nearby, & the companies who elect the policy of “disabled people = dogs” are losing out to their competitors.

A system that denies someone the right to their independence purely because they have a protected characteristic, such as disability, is discrimination. A system that forces people to wait outside to be let in when everyone else can go in & out freely, is discrimination. Yet this system is often regarded as a reasonable adjustment, an accessibility feature, & the proprietors have never had any complaints. The only reason they haven’t had any complaints, of course, is because we got bored of waiting & went to someone who will treat us as the human beings we are.

It’s Not Easy Being Green.

There are countless political parties, pressure groups, and lobbyist groups in support of reducing fossil fuel consumption, non-recyclable waste, and any other practices that damage our planet. On the whole I am in support of these groups and think we should preserve resources for future generations wherever possible. However, there is one aspect of these groups which I find infuriating. It may not be intentional but disabled people are often victimised and penalised by these groups for needing extra resources.

Take the recent movement to ban the use of plastic straws. These straws were actually created to make it easier for people with various mobility issues to drink independently, and banning or placing a tax on them immediately leaves disabled people unable to drink in public. Most of the people lobbying for the ban simply hadn’t considered the existence of disability, but those who had thought of it waived it off as such a minor proportion of the population as to be negligible. It’s not like we need fluids to survive or anything, and we should all be locked up indoors anyway.

Once the fact that disability is a thing had been realised, some suggestions were put forward. Some suggested using paper straws as an alternative despite obvious flaws such as the inability to hold their structure in liquids, and also the lack of a bend near the top which is the element that enables disabled people to drink. Others suggested buying a pack from the supermarket, having failed to realise that finding them in a shop is difficult at the best of times, and that reduced purchases of straws would result in many shops choosing not to stock them. No one realised that those who didn’t need them could stop using them, leaving those who did to use them in cafes in peace, and altering the supply and demand so as to reduce the production of straws in the first place.

Similarly there has been a movement to ban the use of excess plastic when packaging foods, in particular highlighting the pre-peeled citrus fruits packaged in plastic. For most people this is ridiculously and needlessly wasteful, but what about those of us who have difficulty peeling these fruits? The idea of getting someone to peel the fruit for the disabled person was tossed around under the assumption that everyone with a disability has a carer there 24/7 to do their bidding, and also has no desire for independence. Again, simply not buying these products if they’re not needed would solve the problem.

Another contentious issue is recycling. The bin store in my building has a step in the door so either I have to walk, or it gets left until Jarred has the time to do it. We also cannot recycle glass, instead having to take the trip out to a recycling centre. I would be happy to do this despite the inconvenience, but of course the bins are completely inaccessible. I absolutely would recycle more but if I can’t access the facilities to do this, I have very little choice in the matter. When I admit that I don’t recycle every last piece of glass I expose myself to criticism and verbal abuse, and am told I’m just not trying hard enough. Once again disability is forgotten and neglected.

Finally comes the issue of transportation. I can’t ride a bike, obviously, so if something isn’t within the range of my wheelchair battery I rely on vehicles. The use of public transport is encouraged and, while buses are mostly manageable bar the odd rude customer or having to wait several buses for one where the wheelchair space is available, trains are virtually impossible to use. When disabled people choose to use taxis or their own vehicle, which is of course larger and heavier due to the need to carry equipment and thus spitting out more fumes, we are lambasted for being uneconomical. In one admittedly extreme scenario I have even been told I should be using a manual wheelchair instead of a powered one, and that my laziness was killing the planet. The idea that some disabled people might actually need a motor instead of being able to self-propel was preposterous to them.

The brutal truth of the matter is this; when disabled people are treated as equals with individual needs by the eco-friendly groups, we will be able to support their initiatives. Until then there isn’t a lot we can do apart from let these people know that being green simply isn’t that easy.

Off the Rails.

Trains; the sworn enemy of wheelchair users. They’re one of the biggest obstacles disabled people face on a daily basis, and what is perhaps the most frustrating aspect of this is that there is no need for them to be this way.

I’m not one with the money or time to travel around the UK on a regular basis, and my commute to the office where I have my “proper” job is so short that it takes me longer to wash my hair than travel to work. Still I’ve had a few experiences of using the trains, and have used three significant, large train stations; York, Leeds, and King’s Cross in London (think Harry Potter).

The first train station I visited was York. I had been on a weekend away on the North York moors with a group of friends from University, and had traveled up to the destination on a mini-bus provided by another local university. On the Sunday we traveled to the centre of York because Christmas in York is what dreams are made of, but the bus had to return early meaning we had to use the trains instead.

The train station was one of the most accessible buildings I had ever seen with smooth floors, a complete lack of steps, and space to manoeuvre. I was escorted to the correct platform where a ramp was already waiting for me in the doorway of the train, and a wheelchair space had been reserved for me in the carriage. The doors of the train were a little tight to squeeze through but that was my only criticism. Having heard horror stories about the treatment of wheelchair users on trains I was surprised, but welcomed the unexpected consideration of disability.

After 40 minutes the train pulled in the station in Leeds city centre. The doors opened, and I was expected to levitate onto the platform, despite prior warning that someone disabled would dare to use their facilities. My friends ran off to get a porter and a ramp while I sulked in the doorway, and eventually a ramp was provided by a very grumpy porter. The station itself was also highly accessible despite being quite an old building. It seemed mad that the building would cater so well for accessibility, but the trains themselves didn’t.

A few months later I went to London for the very first time. Leeds failed to provide a ramp and porter as did King’s Cross, despite warnings in advance of needing the support. Again King’s Cross itself was so accessible I could have cried, but the return journey was the same despite even more prompting to provide the resources I needed. I ended up hopping on and off the train while Jarred lifted my wheelchair on behind me as, thankfully, we had chosen to use my manual, fold-able wheelchair.

Whilst actually in London we used the tube to get around. Only half of the stations themselves were accessible, and even less provided access all the way to getting on an off the tube, meaning that many tourist attractions required Jarred to push the wheelchair for a long time to get there. There was still a significant gap between the train and the platform, even on the “accessible” carriages. A couple of times my wheels even got stuck in the gap and total strangers would have to help us out.

A year later I booked some more train tickets to London. The website was virtually impossible to navigate and it took a significant search to find the form describing what sort of seat/space I would need, and what times I would need a porter and ramp at both ends of the journey. Eventually the tickets were booked and then something happened that hadn’t the year before. I received an email with my “care plan” listed out explicitly, with what times I would need support and what seat I would have in the accessible carriage. All I had to do was print this out and show the piece of paper to the porters to prove that I had booked support, and it would be provided. Amazingly the system was very effective and it worked perfectly.

You could argue that someone disabled shouldn’t have to book a train 24 hours in advance to gain access to a ramp and porter and that you should be able to turn up, ask for help, and receive said help. We can’t be spontaneous while others can, and it is frustrating. However being able to get on the trains at all without a fight was something special, and is a welcome improvement upon the old system.

They could, of course, negate the problem entirely by having a little common sense; trains that line up exactly with a standardised platform height with a minimal gap, like they modified train stations to do in Japan…

Underestimated: Another Short Story.

It was a cold day in the middle of October and the rain battering the window was loud enough to wake Steve up early. He lay on his back in bed staring at the ceiling, and finally came to the conclusion that he wouldn’t be able to fall back to sleep before his alarm rang at 4 pm.

He sat upright and stared at his new uniform that hung on the door of the wardrobe. He wasn’t looking forward to spending the whole night outside a club in thin, scratchy trousers, a polo shirt, and an over-sized, cheaply-made anorak. However, this was his first shift and he needed to make the right impression on the owner of the club, who was extremely dubious about his capabilities as a bouncer. Steve scoffed at this thought; how could the owner of the club possibly know what wheelchair-users were like when they couldn’t even get to the bar?

An hour later he was dressed and waiting inside the reception of his block of flats for the taxi he had booked the day before. He was glad that he had the option of waiting inside somewhere warm and dry as he watched people hurry past laden down with shopping bags, trying to shelter themselves from the foul weather. 15 minutes after his taxi was due to arrive he called the taxi company; if he waited much longer he would be late to work.

“Hi, this is the Fordon Taxi Company, how may we help you?” a receptionist chirruped in a forced, cheerful tone.

“Hi, I booked a disabled taxi yesterday to collect me at 5 pm but I’m still waiting,” Steve replied.

“Who is this, please?”

“Steve Baker.”

“Ah yes, well, we have no disabled taxi’s available at the moment but we will get one out to you as soon as we can,” the receptionist said after a short pause.

“But I booked this in yesterday!” Steve exclaimed.

“All the disabled taxis were already out on jobs. The next one that becomes available will be sent to you,” the receptionist sounded a little less cheerful.

“I’m going to be late for work,” Steve said angrily, “just because it’s a Saturday doesn’t mean everyone is here for a pleasure trip.”

“I’m sorry sir, but as I said all the disabled taxis are currently in use.”

“This is my first shift! If I’m late I doubt it will set a good impression for future shifts,” Steve pleaded.

“If you’re worried about punctuality, you ought to book your taxi to arrive well in advance, sir,” the receptionist had lost all of her false cheeriness.

“I have!” Steve growled, “Why should I have to wake myself up especially early just because you can’t get a pre-booked taxi to me on time?”

“We only have a limited fleet able to accommodate wheelchairs, sir,” the receptionist said.

“Yes and I’ve seen you using them to transport people without wheelchairs on more than one occasion. Anyway if you frequently run out of disabled taxis, perhaps you ought to have more adapted vehicles,” Steve returned sharply.

“That isn’t my decision to make, sir,” for the first time, the receptionist sounded remotely sympathetic.

“Well, when will my taxi be here?” Steve asked a little more calmly.

“We have just sent one to you now, it should be there in about 10 minutes. Bye,” and with that the phone went dead.

A little over 20 minutes later Steve was finally seated in the back of a disabled taxi heading towards work. He had texted his new boss to warn him that he would be a little late due to issues regarding the lack of disabled taxis available. Within minutes he had received a reply telling him to book the taxi in advance the next time. Steve didn’t have the resolve to argue.

He clocked onto his shift in the staff room, which was the only accessible room in the club, about 10 minutes late, and went to join his new colleagues outside in the cold rain. His boss was stood outside with them, a damp cigarette hanging out of his mouth, drooping slightly in the rain.

“I’m sorry I’m late sir,” Steve said.

“Don’t let it happen again,” the boss reported sternly, “Rupal, this is your new colleague, Steve.”

Rupal was a tall, well-built man of Indian decent who was the typical physically imposing bouncer that clubs regularly placed outside their establishments on a Saturday night. His muscular arms were folded across his chest, and his face was unmoving and impassive until he saw the wheelchair.

“You’re the new bouncer?” he raised one eyebrow.

“Yep,” Steve replied.

“But-“

“I’m in a wheelchair,” Steve raised his eyebrows back, daring Rupal to continue questioning his ability to do the job.

“I take it I’m in charge of any physical stuff then,” Rupal tried to change the subject of the conversation. The boss wordlessly threw his cigarette to the ground and let the rain snuff it out before retreating into the warmth of the club.

“Not necessarily,” Steve replied calmly, trying desperately not to roll his eyes, “I’ve had training in kick-boxing and judo, among other things.”

Rupal silently raised his other eyebrow then turned to face the first group of tipsy students who were swaying their way over to the club.

“Tickets, please,” he said. He waited patiently while one of the girls fumbled around in her tiny handbag, finally pulling out a sheath of damp, crumpled paper that vaguely resembled some tickets.

“Can we search your bags please,” Steve interjected before Rupal could take over the whole job.

“Are you a bouncer?” one of the girls asked.

“Yes,” Steve did not want to pander to their assumptions.

“Oh my god, can you, like, beat people up then?” she exclaimed.

“Yes,” Steve said again.

“Not very chatty, are you?” one of the boys in the group observed.

“That’s not part of my job. You can go in,” Steve nodded towards the door, wishing that they would just go inside and quit questioning him as if he were the subject of an interrogation. He was relieved to see the boy shrug nonchalantly and start to move towards the door when one of the girls grabbed his arm.

“Wait a sec, I gotta get a selfie with this guy, no one on Instagram will believe me if not,” she said. Before Steve had the time to react she was leaning awkwardly over him, telling him to smile. Steve gave the smallest, fakest smile he possibly could and then practically pushed them into the club. Rupal said nothing.

“Rupal, if that happens again, and I’m certain it will, please can you reinforce my instructions?” Steve asked politely.

“So you do need my help after all,” Rupal retorted sharply, “Would’ve been easier if you just let me do the talking in the first place.”

“And what would be the point of me being here if I didn’t do my job?”

“What’s the point of you being here in the first place if you didn’t want people to treat you differently?” Rupal returned quickly.

“People ought to get used to seeing disabled people doing normal jobs like everyone else,” Steve said, “More and more of us are doing just that.”

Rupal shrugged and said no more.

As the night progressed, both bouncers getting steadily wetter and colder with the passing time, more and more people arrived at the club. The later into the night it was the drunker these people were, and Steve lost count of the number of selfies he had been unwillingly subjected to. He was beginning to wonder whether Rupal had been right all along when a scuffle broke out between two boys in the queue.

“Cool it, lads,” Steve raised his voice. Both of them turned around, and it took them a second before they realised that they would have to look downwards to be able to make eye-contact with him.

“What the hell? I don’t have to listen to you,” one of them said as soon as he clocked the wheelchair.

“I’m a bouncer for this club so yeah, you do have to listen to me,” Steve said.

“Like you’re a bouncer mate, I’m not gonna fall for it,” the other replied.

Steve internally screamed at Rupal for a little back-up but Rupal remained resolutely by the door of the club, seemingly uninterested in the latest turn of events.

“Lads, if you want to get into the club and not a police car, just wait patiently like everybody else,” Steve turned back towards Rupal.

“And what exactly are you gonna do if we continue our little disagreement?”

“Well you seem to be in agreement in underestimating my ability to do my job,” Steve replied firmly, turning back around.

One of the other boys in the queue quietly asked his companions to calm down, clearly not wanting to spend longer outside in the cold than was absolutely necessary. The larger of the two fighters immediately turned on the boy who said this, delivering a sloppy uppercut to his jaw and causing blood to spurt from his nose. The girls shrieked and tottered away on their ridiculous stilettos as Rupal finally decided to make his way towards the fight.

Steve sighed and made a quick decision. He was going to have to prove his ability to be a bouncer to prove to customers and colleagues alike that the wheelchair was just a wheelchair, and nothing more. He kicked out his right leg firmly and spun the wheelchair round on the spot; the resulting leg sweep knocked the aggressor to the ground where mud and blood mingled on his shirt. Everyone around them, Rupal included, froze in surprise. The boy leapt back on his feet and swung a clumsy punch at Steve, who easily blocked it before countering by grabbing the boys right arm and pinning it behind his back, gently kicking the back of his knees to force him to kneel so that he was at the right height for Steve. Two police officers who were patrolling the local streets were making their way over the road to diffuse the situation.

Image description: a black and white pencil sketch of Steve kicking the back of the trouble-makers knees, knocking him over.k

Steve looked around at Rupal and the other customers, plus several bystanders who had stopped to watch the scene playing out before them.

“Do I have to convince any more of you that I’m a capable bouncer?” Steve practically shouted as the police escorted the troublemaker away. He was met with a stunned silence, with a few people even managing to look sorry, “Just as I thought.”

Steve returned to his post next to Rupal, admitting people to the club in a steady flow without any trouble. About half an hour later the boss wandered out of the club and lit another cigarette before looking down at Steve.

“Could you please explain to me why I have the local newspaper on the phone asking me relentless questions about my newest recruit?” he asked sarcastically.

“Err..what?” Steve said as they moved off to one side, leaving Rupal in charge.

“It appears that your little stunt was filmed and uploaded to social media, and now the internet is going crazy over the worlds’ most unusual bouncer,” the boss said, “So the newspaper wants to know everything there is to know about you, including how I came to the decision to employ you. I must say, the public relations benefits would be remarkable if only I could step away from the phone for 5 minutes.”

“You didn’t employ me,” Steve raised one eyebrow, “an agency did and assigned me here.”

“There’s no point splitting hairs at this point,” the boss replied, tapping the ash off of his cigarette which landed on Steve’s lap. Steve impatiently brushed it off.

“But, I’ll give you a significant underhand bonus if you keep quiet about that fact,” the boss said quietly, “because this club is getting some serious marketing thanks to you.”

“I’m not sure-“ Steve began.

“You can end your shift early tonight and I won’t reprimand you about your punctuality this time,” the boss added, “and if you want I’ll give you someone nicer to work with.”

“Tempting as that offer is I was only doing what I’m employed to do. It is nothing to do with me that people underestimate me,” Steve returned.

“I wholeheartedly disagree,” the boss said.

“Boss!” Rupal called from his position by the club door, “There’s a film crew setting up to film us.”

“Ah, no leaving early then, we need this to be filmed for everyone to see. I’ll double that bonus instead,” the boss didn’t wait for an answer as he wandered across to the news team to introduce himself.

Steve returned to Rupals’ side.

“Sorry I doubted you bud, but you gotta admit that the wheelchair gives the wrong impression,” he said.

“Because you assumed things about me before I even opened my mouth,” Steve replied, admitting another clan into the club.

Before they could continue their conversation, Steve saw a taxi pulling up outside the club that was adapted for wheelchair users. He silently prayed that this was just another group of drunken students following their social media religiously, but he was horrified to see a wheelchair user make her way out of the taxi. Her outfit was garish and skimpy enough to make it clear what she was doing that night; she would be going clubbing. She flashed a lipstick-stained smile at Steve before joining the back of the queue. Steve started off towards her before Rupal had a chance to say a word.

“Hey,” he said in as polite a tone as possible when he was in ear shot. He was aware of the news cameras turning towards him.

“Hey,” she grinned, “Can’t believe I’ve found another accessible club to visit, all thanks to you!”

“Ah, about that…” Steve began.

“Oh my god, perfect selfie opportunity,” she interrupted him, and Steve begrudgingly subjected himself to the procedure once more.

“Listen, the club isn’t accessible,” Steve blurted out as she put her phone back in her bag. To his surprise she laughed merrily.

“Quite the joker, I see,” she said.

“No, I’m serious,” Steve interjected, “the club itself isn’t accessible, only the staff room is.”

“You’re not kidding, are you?” she sounded disappointed.

“I’m sorry,” Steve replied, “I was assigned here by an agency and had no say in the matter.”

Whilst in conversation, Steve hadn’t realised that the news cameras had moved closer towards him. His last sentence had just been broadcast live on the news channel. The boss’s face was slowly turning red, half out of embarrassment and half out of rage. He fixed Steve with a furious glance but kept his mouth tightly shut.

“What was that? This man didn’t employ you? And the club isn’t even accessible?” a journalist barged in with her microphone, followed by a camera-man doing his best to keep the rain from disrupting the footage.

“Oh, no the club isn’t accessible. But the staff room is,” Steve could see the look on the boss’s face. The reporter turned back to the camera to relay the latest development in the saga as the young woman in the wheelchair turned away. She paused, and then turned back around to face Steve.

“Steve, Steve Baker, right?” she asked.

“Yes,” Steve frowned, perplexed.

“It’s not my fault I couldn’t get a disabled taxi to you on time,” she said.

“What?” Steve was completely baffled.

“I work for the Fordon taxi company,” she explained, before rolling away towards a bank of taxis around the corner.

Steve was left staring after her, flabbergasted, and jumped when his boss tapped him forcefully on the shoulder.

“A word please, in the staff room,” he said firmly.

Steve knew that he was in trouble just from the tone of voice, let alone the infuriated expression etched across his face. Once they were in the staff room the torrent of abuse began.

“I told you to keep that information under wraps, let alone to blurt it out in front of all those cameras! Have you seen the news now? I’m being portrayed as an ableist, closed-minded miser who saw you as an opportunity for free publicity! The news lot are standing outside humiliating me and bad-mouthing my club. You’ve damaged my reputation; you could put me out of business!” the boss yelled.

All Steve had to say in reply was “Good.”

“YOU’RE FIRED!” the boss roared as Steve turned away.

“I figured,” Steve didn’t bother to turn back to face the boss, “I’ll just be assigned to another club and give them some free publicity instead.” With that he left the room.

As Steve left the club a throng of journalists ran over to him, asking him a myriad of questions.

“I no longer work here; the agency will be assigning me elsewhere,” Steve said in reply to them, “But in all of this I must admit I actually have a question for you?”

The clamouring group fell silent.

“Is it a slow news night?” he was met by a sea of blinking, dumb-founded faces.

“Why do you ask that?” one of the reporters ventured.

“Because I don’t see why a wheelchair-bound bouncer is newsworthy. After all, ableism in the work place is illegal; no employer should fail to select someone disabled if they are right for the job simply because they are disabled,” had Steve been holding a microphone he would have dropped it. Steve rolled away from the group of journalists who were shouting questions at his back.

He rounded the corner and was relieved to get away from the bright lights and loud noise. He was finally alone for 30 seconds. Across the street he could see an adapted taxi with its sign lit to indicate that it was available. He looked both ways before crossing the quiet street and was just about to tap on the taxi drivers’ window when the light was switched off and it pulled away, despite the fact that Steve had most certainly been spotted and there was no one but the driver inside. Clearly the taxi driver didn’t fancy getting wet.

Roll Models.

I’m usually one to stay well clear of clichéd ideas like role models, as I believe that people should be themselves and not have to live up to anyone else’s standards. However, I cannot deny that there have been inspirations in my life, particularly where living with a disability is concerned.

Perhaps the most obvious choice for the role model of a disabled scientist is, of course, Professor Stephen Hawking. The man is legendary, and has not only pushed physics into ground-breaking territory with the discovery of Hawking radiation, but has helped to advance the medical understanding of Motor Neuron’s Disease, a relatively rare and peculiar condition. He was also involved in encouraging children to pursue the sciences as viable subjects in schools, co-authored a series of science fiction stories that are entirely feasible according to laws of physics, and attempted to make complex physics accessible to most adults in his book “A Brief History of Time”. In all of this he has not been afraid to expose just how debilitating his condition is, nor has been afraid to poke fun at it. In fact, he has featured on charity specials and TV shows like The Simpsons, and on most of these occasions his disability forms a comedic element of the performance. It would be ludicrous of me to deny that he has influenced the way I cope with my own disability, and has made me grateful for the things that I can do that he could not, such as talking with my own vocal cords.

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

Other inspiring role models include two of the hosts of The Last Leg, Adam Hills and Alex Brooker, both of whom are missing part of at least one limb. Although neither is wheelchair bound they have helped to make people more confident around disabled people, and have shown their viewers that disability isn’t the burden some make it out to be. They have highlighted the serious issues surrounding disability on a widely viewed television program so popular it got its own series of special episodes at the Rio 2016 Paralympics. Similarly, they have proved that disabled people are capable of caring about other social issues such as racism, sexism, Islamophobia, and homophobia, and in this they have earned my complete respect and have helped me come to terms with my own life circumstances.

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

Although I am a lover of rock music, one other significant role model for me is pop superstar Lady Gaga. She is completely unafraid to stand up for what she believes in when facing an intense media following, and is open and confident about her sexuality and any other trait that sets her apart from the norm. She also suffers from fibromyalgia and has had to make difficult decisions concerning touring schedules and public appearances just to manage day-to-day existence. I would dearly love to have the sort of self-confidence she exhumes, although I perhaps wouldn’t follow her fashion choices.

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

There are lots of people, some famous, some who are friends and family, who have inspired me, encouraged me, and helped me to become who I am today. While I do not wish to become carbon copies of any one of them, I would hope that my actions emanate their intentions and that I could also have an impact on issues in modern society.

Medal of Honour.

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

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

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

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

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