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.

Pride Without Prejudice.

The first weekend in August is Pride weekend in the UK, where the LGBTQ+ community come together with the rest of population to celebrate their differences, mostly by sinking back huge quantities of alcohol.  This being my first pride since coming out as bisexual, I was incredibly excited to be attending the various events occurring in the city centre throughout the weekend. So excited, in fact, that I decided to turn my wheelchair into Donald Trump’s worst nightmare.

Pride chair

On the Saturday, the sun was out, and a gentle breeze helped to prevent my skin from burning and peeling off like I was some kind of mutant reptile in the roasting 20°C heat. Jarred and myself made our way to the viaduct, a region of Leeds so closely associated with gay culture that a man in a dodgy police uniform walking down the street is not necessarily a policeman. A street party had been set up; there was music playing, and an impressively sophisticated outdoor bar set up on one side of the street. There was also a small stage, and people were being invited up onto the stage to sing and dance together. It was, perhaps, the only time I’ve ever been glad to see something inaccessible.

We meandered up and down the street, listening to music and investigating the few stalls there were. After a little while, the music stopped rather abruptly, and a drag queen whose make-up was far in advance of anything I could do took to the stage, introducing a performance by the Show Girls, a group of drag performers from one of the local venues. During the introduction, various members of the audience were subjected to light-hearted criticisms, such as querying whether a woman’s afro was fake or real, or whether one man naturally had silky smooth legs. Being on the front row, I was pretty easy to spot.

“And oh, look, Davros has delighted us with their company!”

Jarred and myself both burst into uproarious laughter, setting off the rest of the crowd who had seemed a little nervous as to how to react. What no one seemed to realise is that it was actually quite refreshing for someone else to make a joke about my wheelchair, which quickly becomes the elephant in the room when people do everything they can to ignore its presence for political correctness, highlighting in the process that the wheelchair is all they see. The drag queen was teasing everyone, not just myself, and there was nothing to take offence to.

The Pride parade took place on the Sunday, starting in Millenium square in the centre of Leeds with a free-entry concert. The council had made sure to provide an elevated wheelchair platform, meaning that I could see the stage above the rest of the crowd, although because I couldn’t see through the crowd, another audience member had to direct me to it. I lost count of how many other wheelchair users I saw at the event, and not once did I have to deal with things thrust in my face, or people stepping directly over my feet. Nobody stared at me, and nobody ignored me either.

Towards the end of the concert, I was invited to ride on one of the council’s accessible buses in the parade, representing both the LGBTQ+ and disabled community. I jumped at the opportunity, figuratively, not literally of course. Once I was on the bus, my wheelchair was secured safely to the floor of the bus by a driver who clearly had many years of experience doing this. I got the flag I had attached to my wheelchair to wave, and waved it while meandering slowly through the crowded streets until my arm felt like Attila the Hun was trying to remove it. I was extremely surprised to find that I got a huge response from the crowd, who cheered loudly and waved vigorously back at me.

The best reaction of all the crowd members came from another wheelchair user, who I had shared the wheelchair platform with earlier in the day. When she saw me waving from the bus, her face practically split in half as she grinned from ear-to-ear, and I knew then that I had truly made a difference to someone’s day.

I was as welcome in that crowd as I am at my beloved wrestling shows, and I hope that I never forget what it was like to find pride without prejudice.

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…

Bisexual and Almost Bipedal.

I’m a bisexual, female, disabled scientist; so nuke me, Trump.

My identity is pretty much an amalgamation of social rights issues, but that doesn’t mean I’m not genuine as some people might presume. It’s a strange phenomenon, but I do know a few people with disabilities who are uncomfortable about coming out as LGBT because they might be deemed fakers, and I honestly can’t decide whether the problem is with the way disability is perceived, or the way the LGBT community is perceived.

There are people out there who assign themselves a long list of labels to do with gender identity and sexuality that don’t actually apply to them, who do so because they want to be perceived as modern and unprejudiced. While the intention of being open about equal opportunities is highly commendable, it leaves those of us who are genuine a little conflicted, because coming out as a member of the LGBT community for most people is simply terrifying.

My sexuality confused me long before I became disabled, but I was afraid to discuss it for fear of disappointing my parents, or being bullied at school any more than I already was. For fear of what being open-minded would make me, I suppressed any feelings I had on the matter, and vehemently denied to myself that I was anything other than heterosexual. This actually got easier when I first fell ill, as I had something else to be concerned about, but as the years went by, no matter how much I stamped down on them, my thoughts would turn towards my sexual orientation time and time again.

Leaving home and heading off to university should have been the time when I started to express my sexuality; I lived alone and away from those who had bullied me at school, but I still couldn’t shake off the fear that engulfed me every time the thought crossed my mind. I kept my mouth shut, as I always had done, and tried to move on.

The thing to finally bring me out of my shell was actually Jarred, who was openly bisexual from the day we met. It sounds ridiculous, but I saw the freedom he had in being able to express himself when a good-looking man appeared on TV, and I wanted that freedom. Jarred helped to strengthen my self-esteem and boost my confidence, and I began to realise that if I did decide to accept my sexuality, no matter what happened upon being honest, there would be at least one person I could rely on to get through it. However, I was so used to being scared of my sexuality, that I was too old to “come out”, and on top of the wheelchair it would simply seem like a plea for attention. Once again, I kept my feelings to myself, but the more I saw Jarreds’ freedom, the more I wanted it myself.

I can’t quite explain it, but one day the desire to have that freedom outweighed the fear of appearing fake, and with the help of a glass of wine, the truth seemed to just fall out of my mouth. After a quiet moment, Jarred said, “I know.” I stared at him dumb-founded, feeling foolish for thinking that I would have been able to hide something of this scale from the one person I allowed close enough to see such a thing.

I would like to be able to tell you that my fears and reservations about being open about my sexuality evaporated in an instant at this point, but that would not be the truth. I gradually began to make my closest friends and family aware of the situation, always a little reticent for fear that they would react badly, but with each positive reaction, my confidence grew, until one last hurdle remained. Now, I had to be open and honest with the rest of the world.

A simple post on Facebook sufficed for those who knew me who I hadn’t already told, and then I started to declare myself as bisexual on job application forms. The freedom it gave me in being able to express myself without a serious fear of being deemed a faker for social reasons was even better than I could have ever imagined. For the first time in my life, I felt like I had an identity that was true to my own form, which encompassed my sexuality, lifestyle, and preferences. In telling the rest of the world who I was, I had managed to find myself.

LGBT

Rolling Rosie.

One of my friends who also suffers from Chronic Fatigue Syndrome (CFS) has just started her own blog, and it may interest you. It’s a quick read! Check it out here: https://rollingrosie.wordpress.com/2017/08/01/is-it-acceptable-to-not-be-accessible-spoiler-its-not/

If you haven’t already, why not like @diaryofadisabledperson on Facebook? You can receive a notification every time a new blog post is released, plus additional posts every single day, and can talk to me personally via messenger. I currently boast a 100% response rate!

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 gruelling 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 will 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, or certainly 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 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.

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.

Special Announcement!

Recently, I’ve been working on building up my professional writing portfolio, and this includes doing some freelance work for Cracked.com. My debut article for the international magazine has just been published, and can be accessed here:

http://www.cracked.com/blog/5-ways-my-disability-actually-improved-my-life/

I aim to continue working with Cracked.com, who have been extremely supportive, and are the magazine to give me my first big break.

This week’s proper blog post is down below; so don’t forget to check that out too! Welcome to anyone who has found this blog via Cracked.com!

Galled.

That very night, at approximately 4 am, the pains started up again. The area just below my diaphragm gave the sensation of intense cramping, and the pain spread upwards around the entire rib cage and shoulders. I was denied the pain relief that I had been prescribed the week before, and offered one that I was allergic too, which was stated clearly on my medical notes. The pain continued to build up, and the nurses on the ward repeatedly rang the doctors in charge of my case, trying to get one of them to come and see me. However, despite the fact that you could hear my screams half way down the corridor, I was deemed to be attention-seeking and unimportant.

At 7 am, I rung Jarred. I don’t think I even said a word, just screamed, but he knew what was wrong and dropped everything to rush over to the hospital. When he arrived, one of the nurses was sat with me, holding my hand. Jarred said he had never seen anyone look so worried and upset before in his life; the nurses believed me and my supposed attention-seeking antics. Jarred sat by the bed and held my hand while the nurses continued to fight my corner against the doctors. At 9 am the pains began to fade, and by 10 am they had virtually gone. I apologise to those on the same ward as me for waking them up, but not one of them held it against me.

It was evening before the registrar showed up again, clearly unconcerned about that morning’s episode, his response being that “it had gone now, anyway”. He then informed that I had a 3 mm gall stone wedged in the lower region of my common bile duct, blocking pancreatic secretions, and that I would be having an endoscopy to get a closer look at it the next day. I had never been so angry with anyone before; had the surgeons checked for further gall stones after removing my gall bladder, which takes only a simple test, this would have been spotted, and I wouldn’t have gone through all the pains afterwards.

To numb the back of your throat prior an endoscopy, which inhibits the gag reflex, a numbing solution is sprayed into your mouth, which tasted like rotting bananas. After some sedation, the camera was passed down my throat, and through my stomach into the top part of the intestine, while I lay on my front on the table. The screens above me showed pictures of the gall stone well and truly wedged at the end of the pancreatic duct. After a few attempts to dislodge it, the doctors decided that they would need to open the duct to pull the stone out. They sedated me to the point of unconsciousness and removed the stone, finding that the stone was in fact 5 mm wide.

A few days after the endoscopy I was released from hospital, although this time I was less confident that the pains would not return. Thankfully, the past few months have proved me wrong, and I was finally discharged from the surgical outpatients clinic a few days ago. While I find the first surgery somewhat comedic, and can laugh at the awkward experience, I still find it difficult to smile when I remember its aftermath.

Utterly Galling.

5 days after returning home from hospital, the pains returned, but this time they were much more intense, and lasted longer. I ended up in accident and emergency, and within five minutes of arriving I was being treated because of my breathing difficulties. 10 ml of intravenous morphine later I was feeling a lot better; it’s difficult to tell whether this was because of the pain relief, or the fact that I was as high as a kite. It was difficult for Jarred to tell too, because apparently my speech was an incomprehensible slurring murmur.

I was transferred back to the care of the surgeons who had removed my gall bladder, who this time were far less welcoming, and seemed to consider me a waste of time. However, having had more than enough pain and vomiting for one year crammed into a matter of days, I refused to go home without some form of medical help, and Jarred thankfully backed me up on this because it gave him a few days where he could leave the toilet seat up without being nagged.

First of all, I had a chest x-ray. Being a somewhat busty woman, this was actually quite difficult, because when I was told to press my chest against the flat surface of the x-ray machine, my stomach couldn’t touch the surface, and perhaps this is why the x-ray showed nothing.

Next, they tried a CT scan, which is like being passed through the hole in the centre of a large polo mint. I was quite happy to watch the cameras spinning around me; it was strangely hypnotic. They took one scan without any dye injected, and then another with the dye which would highlight my blood vessels to spot any problems occurring in the cardiovascular system. The only thing wrong with this dye is, because of its ability to produce a sensation of warmth in the thighs, it quite honestly felt like I had wet myself. Apparently this sensation is perfectly normal, I was assured by the radiographer, and I was relieved to find that I hadn’t wet myself at all.

The CT scan showed nothing, so then I had to have an MRI scan. Of all the tests I had had, this was the one that made me feel deeply uncomfortable. My face was less than a foot away from the white roof of the tunnel, and I imagine that for anyone with full-blown claustrophobia it is a daunting experience. I managed to keep calm, although I couldn’t help being annoyed that the grey stripe painted along the roof of the tunnel was off-centre and wonky.

The night after having the MRI scan, a registrar came to visit me while my parents and Jarred were there. He told us that he had seen nothing on the scan, despite him not having the special training on interpreting MRI scan results, and when I pointed out where the pains were the most intense, he told me that it wasn’t the liver that was hurting, despite the fact that the liver spans the abdomen just below the diaphragm, which was where I was pointing. My mum, who is a nutritionist herself, looked like she wanted to rugby tackle the registrar to the ground, and both my dad and Jarred who have no medical background at all knew where the liver was. The registrar tried to discharge me, but I refused until the pains had been dealt with properly. Little did I realise at the time that my stubbornness would prove to be such a wise decision.