The Fifth Bodily Humour.

Recently I’ve seen the term “mobility fluidity” tossed around the internet like an over-cooked pancake, and in all honesty I’m still not sure what to make of it. Since me not having an opinion is a rare event, I’ve decided to record the occasion.

The term addresses conditions like CFS or fibromyalgia that fluctuate on a daily basis. One day an afflicted individual might be able to walk, but the next day they’d use a wheelchair instead. It’s not unusual for someone to label such an individual as a faker or attention seeker (lesser known Tom Jones lyric), and the term is trying to explain this issue.

There is, however, one slight issue. Fluidity can be used to describe someone exploring their gender or sexuality, but I’m not exploring my mobility. My legs are more unreliable than in-flight WiFi, and the rest of my body isn’t much better. That’s all there is to it.

What’s more, the type of people who find gender or sexuality fluidity unacceptable are usually the same type to label someone as a faker for their mobility fluidity. That is a huge generalisation, but hear (or in this case, read) me out on this.

People hear the word fluidit, and they either start discussing Newton’s laws of forces and motion, or they think a liberal is about to start lecturing them. Some will cheer the liberal on, and others will roll their eyes and ignore them. That means they won’t want to hear it when someone uses a word like fluidity in connection with mobility. It addresses the issue but does nothing to solve it. Admittedly I don’t have many ideas about how to fix this myself, short of using my wheelchair as a weapon.

The sentiment behind the terms’ development is entirely well-meaning and while I want to welcome this with open arms, it feels more like trying to swallow a large, powdery tablet. The medical kind, not the electronic kind. You know it will do you good, but right at that moment you are wrestling with the urge to vomit like John Cena against The Rock.

Perhaps the problem lies with those who can’t understand that chronic illness is more complicated than EU politics, but yet another mildly patronising term for them to learn won’t get the concept through to them. I think that, maybe, allowing these people an insight into living with a chronic illness, however embarrassing or uncomfortable that may be, will prove a point. Having written that down, it now sounds like I’m blowing my own trumpet. I guess I’m just trying to do the write thing…

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.

Power to the Wheels.

Want to know when the words “wheelchair access” don’t actually guarantee wheelchair access? When you use a powered wheelchair.

In all honesty I’m not certain someone would choose to use a powered wheelchair over a manual one if they didn’t have to. I’m pretty sure I don’t have to spell this out for you, but powered wheelchairs are significantly heavier, bigger, and bulkier than their manual counterparts, reducing manoeuverability. They are also far more expensive, and much harder to fix should something go awry.

Additionally, it appears to surprise some people that I’m using a powered wheelchair because I need to and not because I’m too lazy to propel myself, which is an accusation I have faced on multiple occasions. Propelling your own manual wheelchair with the addition of your body weight with muscles smaller than those in your legs is extremely hard work, and I am simply too weak and fatigued to do this, plus the cut and blistered hands and muscle strains don’t appeal either. Being pushed around by someone else in a manual wheelchair means that you can’t even go to the toilet without asking someone, and you can’t go out or do anything independently. I decided to sacrifice a little manoeuverability and money in exchange for my independence, and I do not regret that in the least.

What I dislike about using a powered wheelchair is the way companies are allowed to claim that they have full wheelchair access even if a powered wheelchair can’t be used in their facilities. I cannot count the number of taxi firms that have told me I can’t use their accessible cabs because my wheelchair is too big or cumbersome for their vehicles. On one occasion using the trains, the porter sulked at me because he wasn’t sure whether the ramp they’d provided would take my wheelchair’s size and weight, and he had to fetch another. One of the libraries at university had spaces between the shelves wide enough to take a manual wheelchair but not a powered one, although fortunately a similar set of books could be found in another, more accessible library. Many accessible toilets and changing rooms are barely large enough to take a manual wheelchair, let alone a powered one. A local shopping centre even decided to replace their broken lift for entering the premises with a thin plywood ramp that doesn’t  look strong enough to take a manual wheelchair, and won’t change this despite me launching a complaint. On one occasion, I was even turned down for a job because their lift wouldn’t accommodate my powered wheelchair, and they weren’t going to adapt to my needs. Whether this is even legal is debatable but I don’t have the finances to take them to court for discrimination, so they got away with it.

None of this is to say that life in a manual wheelchair is easy; this is far from the truth. Businesses still choose to make themselves inaccessible in general, they face the same problems I do concerning the perception of disability, and sometimes the seats in manual wheelchairs really aren’t comfortable when staying seated for any length of time. It just seems that the world is set up to accommodate some disabilities more than others, which is equally as wrong as any other form of discrimination.

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.

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.

Image Description: the album cover for The Who, Live at Leeds. It's plain brown with dark blue writing, all capitals, in the top right hand corner of the cover.Image description: the blue commemorative plaque for the Live at Leeds concert, which can be found on the wall of the student union at Leeds University.

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.

Deities, not Doctors.

One of the most difficult things to deal with as a sufferer of a chronic illness is actually something that is meant with the best of intentions, that is, prayer for healing.

I understand why people pray; it is something of a comfort blanket to submit all your problems to another being who can take care of them for you, in the same way a small child is comforted by a gentle hug from a parent or friend after grazing their knees during a fall. However, prayer doesn’t have the same appeal for others; it makes them feel awkward and uncomfortable, and I am one of these people.

Most people imagine that prayer for healing only occurs within religious groups of people, but this is not true. While the majority of such prayers have occurred within churches and related meeting groups in my case, I have had a significant number occur completely unprompted in situations that wouldn’t naturally lend themselves to deities. I have even had a total stranger approach me and ask to pray for my healing while waiting outside the theatre for the doors to open before a show.

Whenever someone prays for my healing in my presence, and I don’t immediately leap out of my wheelchair and perform a series of cartwheels, I invariably receive one of two reactions. The first is to blame me for lacking the faith God requires to be able to heal me, which only ever served to push me further away from God, and to distance me from organised religion. The second is to say that God has a plan for me, of which disability is a part, as if that would be enough to stop the pain. Some would even argue that this blog is part of God’s plan; it’s true that I wouldn’t be writing this was I not disabled, but that implies that the decision to try and make a difference to the treatment of disabled people is not my own, and I find that degrading. To be able to deem my efforts virtuous, they need to be the work of my own hands.

I have no issue with people praying for healing, and their kind-hearted and well-meaning sentiments are much appreciated. I simply wish that people would pray for my healing on their own, and would keep their thoughts about why I was not healed to themselves, or that they would let me ask for prayers for healing when I felt ready for them. It is not that I do not want to be healed; I simply wish to have the time and energy to prepare for such a life-changing event.

All disabled people will have very different feelings and experiences concerning healing and prayer, and I am sure that some will completely disagree with me. However, it may be worth asking how someone feels about the subject before immediately jumping into miracle mode, to save the discomfort and embarrassment of everyone involved.