Sex and the Sitting.

By the title alone, most of you will have guessed that this entry discusses a sensitive topic, although I will not be addressing specific and explicit details at any point. This is simply another entry discussing the taboos that surround disability, which includes the doubly taboo topic of disabled people having sex. I hope that I have dealt with this topic sensitively, and do not offend any readers.

It often surprises my friends when I tell them that I am frequently asked about my sex life because of my disability, often by relative strangers, and completely unprompted. People are intrigued to know whether sex is even possible, what position I have to be in, and whether I can satisfy my partner, and it appears that people believe they are being inclusive by asking these questions, although it is better than being ignored entirely. However, if an able-bodied heterosexual is entitled to privacy surrounding his or her sex life, then surely this applies to their equals.

Society’s obsession with sex is undeniable; a small escapade into music videos or women’s magazines will prove this. Being able to discuss sex is no bad thing under appropriate circumstances, and is part of the right to free speech, but the problem arises when people misunderstand what is meant by appropriate circumstances. Discussing sex in a sex education class, or after watching films like “Fifty Shades of Grey” which revolve around sexual activity and consent, or after reading this blog entry, is appropriate. Asking someone unprompted about sex when meeting for coffee, after you’ve just met them at a party, or on a shopping spree is not appropriate. Asking someone unprompted about sex purely because they differ from you is completely inappropriate, and yet people often look proud of themselves while asking for being so modern and unprejudiced.

However, despite all this, I understand why people want to know about this aspect of my life. It is not unwarranted to worry about having a future relationship with a disabled person and how to broach the subject of sex with them, and I know that before dating Jarred, I was always unsure of how a relationship with a bisexual would work out. So, for the record, sex is relatively uninhibited in my case, although there are a few limitations, in particular around the frequency of sex. The fact that sex happens repeatedly should speak for itself on the satisfaction front.

It is worthy of note that sex differs for everyone, and this remains true for those with disabilities. While sex for some like myself differs little from the norm, some will only be capable of particular positions, or may not be able to have sex as frequently as a healthy individual. Therefore trying to evaluate the sex lives of the disabled by asking individuals is futile, as well as inappropriate. On the other hand, accepting that people with disabilities can and do have sex lives would help society to progress in recognising disabled people as equal to able-bodied individuals, and the modern and unprejudiced demeanour desired by so many would be achieved.

Pimp My Ride.

When I meet new people, many of the feel very awkward about my wheelchair; they are so afraid to mention or even look at it that is quickly becomes the elephant in the room. It falls to me to break the ice, which I have several ways of doing. Sometimes I’ll use a quick one-liner to put people at ease, but a surprisingly effective technique is to positively draw attention to the wheelchair.

My first wheelchair had a dull grey metal frame, around a dull black seat, and dull cream cushion. I quickly grew tired of people being so afraid of an awkward social situation that they would go to great lengths to avoid me, although it could always have been my personality of course, so I bought some high-visibility reflective stickers of yellow smiley faces, and placed three down each side panel of the wheelchair. Where-ever I went they would make people smile, and in knowing that I was not afraid to play the fool, most developed a more welcoming attitude towards me. Children adored them, and would reach out to touch them before being whisked away by mortified parents.

When I upgraded to my second wheelchair, I purchased one with a red, sparkly frame, which in itself did a lot to dispel the awkwardness when meeting new people. I have applied the same principle to my newest wheelchair, which also has a bright red frame, and is a talking point for many.

Christmas is another fantastic opportunity to assure people that I am an ordinary human being with a sense of humour. Every year I buy some cheap tinsel, which I wrap around the frame, and every year I receive lots of positive feedback. Complete strangers even call out complements across the street. However, this pales into comparison with what my school colleague and paralympian, Coral Batey, once did with her wheelchair. She somehow managed to wrap battery powered fairy lights around her wheels, and it was quite a sight to watch her glide down the corridor with twinkling lights beneath her, and it certainly had the desired effect. The BBC have even reported on a group of wheelchair users who modified their wheelchairs for Halloween, including one child who wanted his wheelchair to become a Tie Fighter for the day: http://www.bbc.co.uk/news/disability-37774000.

It may seem a simple and even immature thing to do, but adding something special to a wheelchair raises people’s interest, and they see you in a positive light. Changing society’s stereotypes and taboos does not happen without effort on behalf of the minority, taking time and persistence instead. That is, of course, the very purpose of this blog, because people’s opinions and actions towards disability will not change if others continue to live with misconceptions influencing their actions. Therefore, a little silliness could be the driving factor behind immense social change.

Rock and Roll.

Anyone who knows me well knows that Green Day are the best band in existence, followed closely by My Chemical Romance, and The Foo Fighters. Many hours have been spent lying on my bed, eyes closed, becoming immersed in the music. Each song conjures up another emotion or memory, and the best songs are the ones I remember hearing for the very first time. Music is a large part of my life, and has been one of the driving factors in coming to terms with my disability, while also offering me a simple form of stress relief when it is needed.

Most of my meals are accompanied by the radio tuned into Planet Rock, who don’t just play the classics on repeat like most stations, but bring in new and obscure material. It was where I first heard about Green Day’s latest album, and where I first heard many of the singles from that album. When one of the presenters, Wyatt, embarked upon a country-wide cycling tour to raise money for charity, I naturally rushed out to welcome him when he stopped in Leeds. The poor man had cycled more than 200 miles in a little over a day, but when I asked for a photograph with him, he still made an attempt to get on the same level as me. This was despite the fact that his knees were almost completely immobile, hence the awkward pose.

Wyatt

While rock music over speakers is still an experience, nothing quite tops live rock music. I will never forget going to see British Rock bands Yashin, and The Blackout; it was one of the best evenings of my life. The wheelchair space for the concert was on a balcony connected to the stage, where the band that wasn’t on stage would mill around, and I managed to worm my way in with several of the Yashin crew. They were friendly and comedic people, and the surrealism of it made it all the more special. Several photos were taken that evening, and the picture my best friend took of me with Harry, the lead singer of Yashin, is still one of my favourite photos of all time.

Harry and Me

When I bumped into another Yashin member, Kevin, at a different concert, I was a little disappointed that I didn’t manage to get a photo. However, he seemed so genuinely pleased when I complemented him on their newly released material that it didn’t matter to me. He even held the door open for me and shook my hand afterwards, contrary to the stereotypical image of a self-centred rock star. So it seems that the people of rock are much like the crowd at a wrestling show; loud, obnoxious, and warm-hearted.

A Pub Roll

One of the most common aspects of student life is the pub crawl; going from one pub to the next and getting shamelessly drunk along the way. The most popular of these in Leeds is the Otley Run, which goes through 15 pubs, and is usually themed.

My personal favourite of all the themes I’ve seen was a Donald Trump theme, where a group of approximately 20 men staggered through the door of a bar in the student union, dressed in suits with cheap red ties and false blonde wigs. The news was being broadcast on a television behind the bar, and when the president appeared on the screen, the entire group started roaring and jumping up and down in their drunken state. However, much as I would like to join in with such an event, there is one small but significant problem; over half of the pubs have steps into them, and wheelchairs cannot levitate like Daleks.

In contrast to my predicament, I am not prepared to sit aside and be excluded from this. I decided to take action and designed my own pub crawl, the pub roll. Jarred and myself started in the students union, in the modern bar called the Terrace, before heading down to the basement to sit in the cosy and traditional Old Bar.

Terrace

After a couple of drinks we headed out into the brisk Winter night, and wandered down to Dry Dock, a bar stylised to look like a boat beached on a mound of grass. Much to my surprise the bouncer held the door open for me, and did the same on the way, wishing me well as he did so.

I would like to think that although a tad tipsy, no one could tell, as I did not have to face the troubling task of balancing on two feet, and could rely on six wheels instead.

We crossed the main road and entered City Bar, which was in the union of the rival (and inferior) university, and then headed up to a branch of Wetherspoon’s called the Stick or Twist.

Stick or Twist

When we were done there, we meandered slowly down to another Wetherspoon’s. By the time we were done there, I was seeing three of everything, so instead of progressing onto the Botanist, an accessible bar and restaurant, as planned, we dragged ourselves home. Trying to drive my wheelchair in a straight line was something of a challenge, but the quiet streets posed no threat to unsuspecting pedestrians.

I was proud to have done something about the Otley Run situation, that being getting drunk in the name of social justice. It’s always good to know that with a little extra thought such issues can be overcome, and it is worthy of note that the shops, pubs, and other venues that make themselves accessible are the ones to receive my money.

 

A Way With Words.

One of the funniest things about being a wheelchair user is just how many phrases in the English language contain typically ablest sentiments, that when said to someone using a wheelchair could be construed as offensive, even though in the majority of cases, no offense was intended.

It was mid-summer in 2015 when I bumped into my neighbour as we passed the shop he had just visited. Being British, we stopped to make awkward conversation limited to topics such as the surprisingly nice weather, and how clean his car was. At this point he laughed and said that the car was his pride and joy, and he used it everywhere outside of work. I replied, “It’s ok, I don’t walk anywhere either,” which served to break the ice and remove the last of the awkwardness between us.

In September 2016, I visited PC World to help Jarred choose a suitable laptop for his studies. After selecting the perfect machine, we went to a desk where we could discuss student package deals including Microsoft Office and anti-virus software. At the desk we were told to “take a seat”, and I simply couldn’t resist piping up with “No need, I already have one.” The poor man looked mortified until Jarred assured him that I was evil, and took great pleasure in convincing people that they had upset me, which I was in no position to deny.

On one occasion shortly before Christmas I was due to give a presentation about a group project I had been involved with. The room in which the presentation was taking place was small, and a little difficult to access from the wheelchair being an old building, so I decided to use walking sticks to cover the short distance from the reception to the presentation, as I was feeling relatively well. My lecturers were aware that it wasn’t common for me to do so, and couldn’t hide their surprise when I walked in alongside my peers. “Christmas miracle,” I said in response to their bemused looks, which consequently lightened the atmosphere, allowing the presentation to run smoothly.

Probably my favourite of all such situations occurred during the pantomime in the Student’s Union, which was like a normal pantomime but with crude language and more explicit sexual references. It was based on Aladdin, and during Jafar’s first scene, he recited his evil plan in an animated fashion. At the end of this speech, Jafar declared loudly “Not even you will stand in my way”, and pointed directly at me. In response, I pointed downwards and simply said “Wheelchair”. A flicker of a smile flashed across Jafar’s face, but with all due credit to the actor, this was his only break of character while the audience roared with laughter at his predicament.

Some people find my attempts to laugh at my situation odd, and suggest that to some it may even be offensive. However, I am always careful to make myself the subject of these jokes to avoid causing offense to others. What I do find, is that people often don’t know what to say to someone with an obvious disability, so I try to make light of the issue to make others feel more comfortable. Once they know that I am a normal person who is capable of laughing at myself, they relax and treat me like a normal person without even realising it. I get a refreshing glimpse of normality, and others lose their fear of talking to disabled people. I fail to see why this is in any way odd or offensive, and if anything I recommend it to other disabled people as a way of integrating with society. In other words, taking a stand for disability doesn’t have to be aggressive…

The Marvel-like Origin Story with Less Explosions – Part 3.

Initially, the Graded Exercise Therapy worked well, but as time progressed it became apparent that something had gone awry. I was being pressured to increase the exercise level too quickly, and the star jumps began to cause intense jarring pains along my spine. My muscles began to ache more than they had before the therapy, and my fatigue increased seemingly exponentially. Upon returning to the physiotherapist, I was advised to stop the exercises, and was also informed that I would probably need to start using a wheelchair when I left the house. Even after stopping the exercises, the pain, fatigue, and dizziness continued to worsen, until the state in which I currently live today was reached, and I could no longer walk outside. Being too weak to push my own wheelchair, and unable to afford a powered one, I had to rely on my parents every time I left the house, and had no independence.

It took three months of arguing with my school before I was permitted to use my wheelchair in there, making me more and more ill during this time. I was also denied an assistant to push my wheelchair around school, and relied on the support of my peers, including those who had previously bullied me, to help me obtain an education. Fortunately, after another few months, the school realised their mistake, and when I started my A-levels, I was given the support I needed.

I saved up for over a year, and eventually managed to by a second-hand powered wheelchair for over £1,000. It was in this wheelchair that I completed my A-levels, and I gained the necessary independence I needed to attend university. Unfortunately, this wheelchair had air-filled tires, and with the inevitability of death and taxes, I eventually suffered a puncture. My poor wheelchair was unusable and was too expensive to repair, so I ended up with a new one, this time a brand new one with solid tires.

New Wheelchair

Even after 6 years of medics poking and prodding me, and modifying my medication to treat my symptoms, only one thing serves to alleviate the pain temporarily; hydrotherapy. I regularly visit the local swimming pool, where I perform gentle stretches and exercises, and even swim a little. The water removes the pressure from my joints, and for a few hours after exiting in the pool, I am reminded of what life felt like prior to the meningitis. For the remainder of my time, I am disabled and pain-stricken, and while this is inevitably disheartening, there is still an element of hope in my life.

Medical research continues to improve the understanding and treatment of CFS, and without using a wheelchair, I would never have met my two best friends. One is disabled herself which naturally brought us together, and the other got run over (by accident) when he tried to get between me and pizza. Similarly, I would not have met Jarred, my beloved partner-in-crime, who I only met after choosing to remain in university accommodation due to its high standard of accessibility. It is even plausible that I would not have attended university, as the meningitis made me realise how precious life is, motivating me to make the most of it by getting an education. Of course, this blog would not exist were it not for a virus finding my brain tasty.

Disability is not the life sentence I thought it would be, and has enriched and improved my time more than I could ever have imagined, so that I live a full and happy life. Disability does not mean “I can’t”.

The Marvel-Like Origin Story: Part 2.

At the time, I didn’t take in the implications of what was happening. I simply swallowed the ibuprofen and drifted back into a semi-comatose state, broken only by the cold tip of a thermometer being pressed into my armpit. My temperature had decreased, and I did not require hospitalisation. However, meningitis being an infection of the protective layers surrounding the brain, medical attention was advisable, but home visits from GPs were not available, and I was unable to make the short journey to the surgery.

Without a doctor’s note my school did not believe that I had been as ill as I claimed, and I was forced to sit an exam just one week after contracting the illness, and returned to lessons in under two weeks, including sports and dance classes. After much arguing with the school, I was eventually permitted to cut my workload down to the essentials, and dropped dance and sports altogether, but the damage had already been done.

After 6 months I still felt exhausted with minimal exertion, my muscles constantly ached, I was permanently nauseous, and my head felt like The Borrower’s had invaded my skull. I decided it was time to seek help, and went to see a doctor. After reporting all my symptoms and undergoing a small physical examination, I agreed to have blood samples taken, which all came back negative. It was suspected that I had Chronic Fatigue Syndrome (CFS), previously known as Myalgic Encephalomyelitis (ME).

I was referred to the paediatric out-patients clinic at a local hospital to confirm this suggestion. Following a more thorough investigation, the diagnosis was confirmed, and I was prescribed pain killers and other medicines to treat my symptoms, and I was referred to the physiotherapist.

The physiotherapist was a short, plump woman who was genuinely friendly and reassuring, and over the course of an hour she questioned me about my symptoms, their severity, and which regions of the body were most effected. She also assessed what exercises I was capable of performing, and decided to place me on a course called Graded Exercise Therapy. Every day I was required to do a set number of step-ups and star jumps, and to walk a particular distance, and each week the number of step-ups and star jumps, and the distance I had to walk was increased. It was designed to help me build up my energy and strength gradually, restoring me to a best state of health possible since the meningitis. Since there was, and still is, no cure for CFS, this was my best hope of recovery.

The Marvel Like Origin Story With Less Explosions: Part 1.

As a child I was healthy and active; the only illnesses to affect me were the usual bouts of colds, flu, chicken pox, and vomiting bugs that everyone invariably suffers. Living in Yorkshire meant that beautiful hikes were only a short drive away, with Mallham cove being a particular favourite of mine. I also partook in swimming, netball, and dance outside of standard sports classes in school, and frequently helped my parents with gardening and housework. By far my favourite activity was drumming, because letting the rhythm flow through what felt like my very soul was endlessly liberating. I played in two bands, and the look of surprise on the audience members’ faces as the tiny girl took her place behind the drum-kit never failed to amuse me.

On Wednesday 5th January 2011, I came home from school tired, aching, and with a prominent headache, but thought nothing of it. Assuming I was coming down with a cold, I went to bed early, and drifted off to sleep completely unaware of how different my life would be when I woke up.

In the morning the headache had worsened, my temperature was rising, and my neck felt stiff and painful. When mum switched the light on to check on me, the dim light of the energy saving bulb felt as intense as a sun burning in front of my face. Mum checked my hands and feet, which were cold, and then placed her hand on my forehead, which was extremely warm. After this I remember very little until the phone rang several hours later; my mum had completed a symptom form on the NHS website, and within minutes of submitting the form, received a phone call from a concerned nurse. I was vaguely aware of my mum speaking on the phone, and then my bedroom door opened, and the phone was pressed to my ear.

“Hello. Can you tell me your name please?” the nurse asked.

“Emma Steer,” I replied.

“And your date of birth?”

After I minute I managed to give the correct response.

“Do you have a headache?”

“Yes, a bad one, it really hurts.”

“Does your neck hurt?”

“Yes, I can’t move my head at all.”

“How is your temperature doing?”

“I’m hot and cold at the same time.”

“Any signs of a rash?”

“No.”

“Can you pass me back to your mum?”

I muttered something incoherent, and weakly pushed the phone towards mum. A short conversation ensued before she put the phone down.

“It’s viral meningitis,” mum told me, “and you need to take some ibuprofen to control your temperature. You shouldn’t get blood poisoning because it’s viral, but if your temperature continues to rise, they’re taking you to the Intensive Care Unit of Sheffield Children’s Hospital in the air ambulance.”

An Unlikely Crowd.

When I tell people that I enjoy watching wrestling, their eyebrows travel so far up their faces that they merge with their hairline. What surprises people even more is that when I attend live shows, I am made to feel the most welcome I have ever felt in a crowd. Many assume that the staged violence draws in a crowd of mentally disturbed misogynists, but the reality is that women enjoy watching sweaty, muscular men run around in their underpants as much as the men appreciate the women.

The main appeal of attending a wrestling show, however, has no element of sexuality. The fact is that the shows are fun to watch, the crowd is a group of friends having a good time, and the wrestlers receive the respect and admiration they deserve for mastering their craft.

You may be wondering what wrestling has to do with being disabled, so I shall reiterate how welcoming an environment it is. I am not stared at, nor ignored, and no one uses condescending tones when they speak to me. My opinions are not immediately invalidated just because I am disabled, and it is rare that the first question people ask me is how I ended up using a wheelchair. I have spent many happy hours in the company of wrestling fans, chatting, laughing, and getting to know each other. Even the wrestlers themselves accept me; when they run around the ring high-fiving everyone there, they always lower their hand so that I am not missed out. Were I to go on a night out with any of these people, I would feel perfectly safe, and far less vulnerable than I do in most bars and clubs.

wrestling

Recently, when the show was searching for a new venue, they made accessibility one of their concerns so that myself and other wheelchair users could continue attending the events. This level of dedication to equality is frequently neglected by large international companies, who leave ramps obstructed, automatic doors switched off, and allow disabled facilities to be misused, let alone smaller companies.

When you see someone dressed in all black, with plenty of leather, studs, piercings, tattoos, and eyeliner, wearing a wrestling-themed t-shirt, don’t be afraid of them. When someone tells you that they enjoy heavy metal and wrestling shows, even if they don’t look like that, don’t reject them. It is these people who have unquestioningly welcomed me into their midst, and they have warm hearts and unprejudiced minds. What’s more, they are not afraid to help someone in need, such as a young disabled woman in need of companionship.