mobility – Diary of a Disabled Person.

Liberty Denied.

When disabled people ask you not to use the phrase “wheelchair-bound”, it’s not political correctness gone mad; it’s political correctness asking you not to contribute to the harmful stereotypes that still plague disabled people’s lives despite proving them wrong time & time again.

The term bound has a lot of implications. It implies that no wheelchair-user, the phrase we would like you to use please, can stand or walk at all. This then contributes to the accusations of faking a disability for benefits, because as we all know that is by far the most effective way of paying the bills. It also contributes to the notion that sudden, inexplicable miracles are a lot more common than you would reasonably believe.

Bound is a word that also implies a lack of freedom, that someone is imprisoned by a wheelchair, which is not true. This in turn causes a lot of physical & mental harm to individuals who become disabled.

When it was recommended that I would need a wheelchair eight years ago, I was adamant that I would only use it for very long trips. I stubbornly refused to use it at after school events & on shopping trips, for fear that I would become disabled. The truth was that I was already disabled. A wheelchair doesn’t disable you; dysfunctional body parts do, & you just might end up using a wheelchair should such a malfunction occur.

My stubbornness left me in horrendous pain & with unbearable fatigue. Then, thanks to Graded Exercise Therapy, my health plummeted & I was left with no choice but to use the wheelchair every time I left the house.

As I expected my life was transformed, but to my surprise it was changed for the better. Suddenly I had my life back. I had an education & friends & as the years passed, I would make my way to university, employment, & marriage. None of it would have been possible without my wheelchair.

There is a stigma that becoming more dependent on mobility aids is “giving in” to disability. This is not true, unless of course you count “giving in” as learning to face an inherently ableist society where your basic human rights are constantly overlooked or denied completely. This stigma makes people believe that mobility aids are a worst-case scenario, that using them is to show weakness, & that their lives will become worse if they use them.

Many of us seem to have that awkward relative who, despite being increasingly aware of their age (to put it politely), refuses to accept help or mobility aids. How many bones have been broken because of this? How many people have been trapped in their own homes because of this? How many people lose their friends because of this? The fact of the matter is that not using a mobility aid is far more likely to imprison & harm someone than using one is.

When writing this I must admit I did have one particular person in mind, although from discussions on social media I know that this is a very common problem. I don’t know if that person will read this, & if they do I may well end up in trouble for suggesting such heinous things, as it is a difficult topic to discuss. By using more inclusive terminology that better reflects the experience of using a wheelchair or other mobility aid, perhaps we can learn to have this difficult discussion, & improve the lives of millions of people across the globe.

Alternative Reality.

I suppose it would be unnatural if I didn’t wonder where life might have taken me had I not suffered meningitis and developed chronic fatigue syndrome (CFS) as a consequence, even if those thoughts aren’t necessarily healthy. Having gone through this thought process multiple times, and having always drawn the same conclusions, I am no longer ashamed to admit that I’m glad it’s all happened. This might seem odd, but I intend to explain myself fully.

Prior to suffering meningitis I was boring. I lived in a normal house, in a normal family, doing normal things like going to school and watching TV. By no means was that negative and those are memories that still mean a lot to me, but I was completely unremarkable. I was terrified of not fitting in with my peers at school and went out of my way to make myself “cool”, only to start hating myself all over again when I inevitably failed. Some people are born abnormal and I guess it’s with them that I belong.

Then the meningitis hit like a slab of concrete and everything I thought I knew was turned inside out. The majority of those I called my friends turned their back at the soonest opportunity and I found myself unable to forge meaningful relationships with anyone else. It was at this point that I began to notice the stigma surrounding disability and all the inequality that came with it, and I fell into a deep depression. I tried to kill myself. I self-harmed. I decided that if people would only ever hurt me that I’d alienate myself from them. I shut myself in my room, listened to music as the artists were the only people who seemed to understand my plight, and threw all my energy into my studies as a distraction.

The day finally came when school was over and done with and couldn’t have come soon enough. The following summer I had my hair cut shorter than ever before, had my ears pierced and allowed my wardrobe to develop a distinct Gothic vibe. I started university being openly alternative and introduced myself to all the new people as “Mini”, an old nickname and my internet persona. I met my best friend, I met my partner, and I found my studies vibrant and interesting. I grew more and more confident and as I did so, I started to really express myself through my appearance, and then I became brave enough to fight back against the low-level discrimination I faced on a daily basis. A while ago I started “Diary of a Disabled Person” and the reception to my writing has far exceeded any expectations I had, however unrealistically dreamlike. In a matter of years I went from a boring wreck to an interesting one.

Had I not fallen ill I may well have remained trying to fit in with my peers, and may have concentrated on that so hard that my academic work suffered. There’s a good chance that I would have found joy in my music but not have found it as relatable as I do now, and I certainly wouldn’t have started this blog. I might have never developed the pure passion I have for writing that prompted me to write this brutally honest and perhaps slightly arrogant passage. I wouldn’t have developed the fighting spirit that has dragged me through the past few years and my rebellious streak may have remained buried deep down. However, all of these things are insignificant in comparison to the other thing I gained; the ability to forge lasting, meaningful relationships, and the confidence to allow someone close enough to be able to see every last little flaw and insecurity without fearing that they would be exploited against me.

Being chronically sick is rubbish and there are few days when I don’t wake up and think “I just wish this illness would leave me alone”. I will never ignore that, but I cannot ignore the positives either. I’m not being brave or showing an unbreakable spirit by thinking like this; it is reality and I don’t need an alternative one.

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…