School, Sickness, and Stupidity: Part 1.

It’s been a while since I left school and I still don’t talk about it much. There’s far too much raw, pent up emotion for me to discuss it coherently, but writing it all down should allow me to give a logical account of my experiences.

My secondary school was situated at the other end of the road I lived on and was just visible from my parent’s bedroom window. It was set on quite a steep hill meaning that one side of the school had an extra level built into the hillside, and it had a central forum where large gatherings and assemblies took place, with all the classrooms built on a loop surrounding this. The school opened just as I transferred to high school meaning it was brand new; the old, dilapidated school it had replaced was being knocked down a few metres away from the shiny, new building.

I was half way through Year 10 (USA 9th Grade) when a virus decided to chow down on the protective tissue surrounding my brain. Given that our GP’s surgery was closed for the day and no other medical aid would physically come to us unless my condition grew significantly worse, we couldn’t get proof that I had, indeed, suffered such a serious illness. Unsurprisingly the school was skeptical as to my plight without the necessary proof, and stipulated that I still sat my GCSE biology exam just one week after first falling ill. The school also stipulated that I wear my uniform, including the stuffy and uncomfortable blazer, but assured my mum that I would be provided with a well ventilated room and access to drinking water.

A couple of days after first falling ill I started to revise as much as I could, which in all honesty wasn’t much. I felt so rotten I don’t think I took much of it in anyway. Come the day of the exam I hauled myself out of bed early, ate a little breakfast, pulled on my uniform, and went to school. I was put in one of the hottest rooms in the building where none of the windows opened, and I wasn’t even allowed to get water from the tap outside. To make matters worse another girl sitting the same exam had also been ill, and therefore was in the same room as me. She turned up extremely late without her uniform and I was made to wait to start the exam until she arrived. All I remember of the paper is wanting to use it as a pillow for my aching head and stumbling out over an hour later wanting nothing more than to be left in peace.

Another week of bed rest later and the attendance team at my school were ringing up constantly, nagging my mum about my absence from school. Over the phone the doctor had advised I take several weeks off to rest following the meningitis, but without the note our case would not be heard. I was pushed back into school on a part-time basis while the attendance team continued to pressure me and my parents until I was back full-time. This included participation is both sports and dance classes despite my mum trying her best to make them see reason.

A couple of months after sitting the exam the results came out. I had obtained a grade B, which I was pretty pleased with under the circumstances. Unfortunately a grade B was below my target grade and as far as the teachers were concerned, this was inadequate. It was quite the fight to prevent being entered for a resit of the exam, and being told that my best efforts under adverse circumstances were worthless did nothing for my self-esteem. I felt like my entire life was falling apart around me into an irreparable mess and nearly everyone was against me. I tried to put it all out of my mind and concentrate on my future exams, keeping my head down and staying out of trouble, but this was harder than I could have imagined.

Shortly after receiving my exam result I was pulled to one side during a gym lesson for a “quick discussion”. What followed was a lengthy and entirely one-sided lecture on how it didn’t matter how academically gifted I was, being physically ill would render it all pointless. She then told me to start running on the treadmill, not walking. Had I been the more confident individual I am today I would have reminded her to have her quick discussion with Steven Hawking and see what his reaction was, but I just nodded mutely and did the bare minimum that would qualify as running to appease her. I think this was the point where I started to truly hate school.

Eventually the summer holidays arrived for which I was grateful. Over the coming weeks I regularly saw the GP, running tests until I was finally diagnosed with Chronic Fatigue Syndrome (CFS). Now backed up with medical evidence I was finally allowed to drop dance and sports, but it took a further six weeks to convince the school that my timetable was still too much for me to cope with. Eventually I was allowed to drop French and I was on a timetable that I could manage while I was so ill. Even so I still had to take some time off school due to illness, made worse by the stress of the constant hounding from the attendance team.

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 used to being scared of my sexuality, that I would be deemed old to “come out”, and that on top of the wheelchair it would simply seem like a plea for attention, that I continued to keep my feelings to myself.

I can’t quite explain it but one day the desire to have that freedom simply 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

I Think, Therefore I Am Intelligent.

I’m blonde. I’m from Yorkshire. I’m disabled. By any stereotype I should be so lacking in intelligence as to effectually be brain-dead. However, considering that I have a degree I would hope that the opposite is the case; if not, I have wasted far too much money to bear thinking about. Despite the evidence that I am, in fact, an intelligent life form, many people see that I am sat down on some wheels and assume that this somehow drains the knowledge from my brain. I don’t know how or why this assumption has come to be, but it has, and it’s as annoying as a mosquito with a vuvuzela up its backside.

Recently, I ended up in hospital with severe pains around my rib cage and abdomen, which turned out to be gall stones rattling around inside of me like some kind of fleshy maraca. I needed emergency surgery as the case was acute, but when I met with the surgeons before my operation, my mind was not on the procedure. I wasn’t even sat in my wheelchair and they were talking to me like I was two, and as someone studying nutrition, I am perfectly aware of the implications and treatment for gall stones. I took great delight in halting their explanation of what the surgery entailed for my entrails, and described it to them using the full medical term. They looked moderately surprised but to their credit took it within their stride and laughed; it was only then that I realised I probably shouldn’t mock someone about to perform surgery on me.

The surgery was performed successfully, or so they thought, until the pains returned a few days after having the operation. Several scans later they found one last little blighter wedged in the bile duct, and an endoscopy was performed to remove it. My stay in hospital was longer this time, allowing me to develop a system for getting doctors to treat me as an equal; I read “intelligent” books including “On the Origin of the Species” by Charles Darwin and “The Double Helix” by Dr J. Watson, and also kept a puzzle book by the side of the uncomfortable bed. The change in the doctor’s attitudes towards me was remarkable, but as soon as I got back into my wheelchair the original treatment resumed. Had I had the energy at the time I would have taken great delight in sitting in my wheelchair all day while reading one of those books just to confuse them.

I should mention that it isn’t just doctors who treat me like this, but this is something I face most days from total strangers. For example when I was wearing my baggy university hoodie one day, the woman behind me in a queue at the coffee shop asked me if it were my boyfriends’. I remarked that for all she knew I could have been a lesbian and not to make such shallow assumptions about people. The man behind her in the queue found my comment particularly amusing, which embarrassed the woman even further.

Whenever I encounter such treatment, after I have dealt with the situation I often wonder if Professor Stephen Hawking ever has to deal with this. If anyone could disprove the association between disability and stupidity then it’s him, yet I still face this issue regularly and I know that the situation is similar for other disabled people. It’s utter madness.

Uncharitable Charity.

At university I lived very close to my student union and regularly ate in the refectory which saved a lot of effort on cooking and washing up. The dining hall there is vast, with white tables and uncomfortable wooden chairs crammed into every space possible, and a dark laminate floor that makes my wheels squeak when they’re wet. At the end furthest from the kitchens is a small stage that is often used for concerts and shows outside of the refectory’s opening hours, which has hosted The Killers in the early 2000’s, and is where The Who’s “Live at Leeds” album was recorded.

Live at LeedsThe Who

While this stage is fit for purpose for concerts, it has two steps up to it and no ramp. Frustratingly, this was where the union decided to host their charity clothes sale for Cancer Research UK, without providing access for wheelchairs. I had been looking forward to the event for a few days and so when I arrived I was pretty disappointed about the inaccessibility, especially as the union has several accessible rooms where such an event could easily have been held.

Since the stall was quiet at the time, the member of staff on duty wandered over to speak to me. She told me in rather patronising tones that she was “ever so sorry” about the inaccessibility, but that nothing could be or have been done to resolve the issue. This was, quite frankly, utterly ridiculous, as even if they couldn’t have booked an accessible room they could have easily acquired a temporary ramp. Annoyed, I made a snide remark about how my money was worth the same amount as anyone else’s, before heading up to the coffee shop overlooking the refectory to drown my sorrows with caffeine.

Once I was settled with a large americano, I emailed a member of staff from the union who I knew relatively well from previous accessibility quibbles, and despite him being away from his desk for the day according to the automated reply I received, he responded within half an hour by assigning a temporary ramp to the event. A few minutes later I re-appeared in the refectory, ready to raid the clothes stall. This time a different women was over-seeing the stall, and she could not have been more apologetic or upset about what had happened. Her colleague, now nowhere to be seen, was quickly forgotten as I browsed the clothing rails. I picked up a leopard print scarf from the accessories section, and managed to find a beautiful white blouse covered in black swirls from a high-end clothes store that I could never normally afford. Feeling self-satisfied at having spent less than £5, I returned to my favourite table in the coffee shop and downed another americano and a frozen yogurt to boot.

While the attitude of the first member of staff left much to be desired, the attitudes of the man who organised the ramp and the second woman running the stall more than compensated for this. It is not the problem that causes me an issue, but the ability and willingness of people to provide a solution for the problem instead.

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. However, if the able-bodied are entitled to privacy surrounding his or her sex life, then surely this applies to the disabled too.

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 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. 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 them feel very awkward about my wheelchair; they are so afraid to mention or even look at it that it 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 a 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 peer 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; 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.