We all have an urge to conform to expectations. To not make waves. To have a stiff upper lip. It’s just our nature as humans – and especially as Brits. We are proud of our fortitude; our ability to get on with it in the face of adversity. Imagine then that you also have a disability. Don’t worry, this isn’t going to turn into one of those worthy, but ultimately boring descriptions of how bad we have it; that’s only useful if you want an Oscar. I’m just pointing out that there is an additional weight of expectations on our shoulders as to how to behave, especially if, like me, you have what is termed an ‘invisible’ illness.
I have Multiple Sclerosis (MS). It is a neurological condition that means my body attacks its own nervous system, stripping it of its insulation and leaving the equivalent of bare wiring all over the place. This means that I have pain, spasms and fatigue which cause problems with walking, gripping and being able to get through the day without feeling like you’ve just done Tough Mudder. Unfortunately, these problems don’t come with the usual signifiers of disability (wheelchair, white cane or hearing aid) as standard, though we might acquire them along the way. This then gives rise to that most annoying of statements, ‘But you don’t look sick….’
‘Well no, maybe not but…’ And that’s where the justification comes in; the desire to prove yourself somehow worthy of being disabled (like that’s a prize in modern society!); the endless explanations of your condition that make you think you really should record it on your phone for convenience; the stick you now rely on that you once just used to prove to people that your erratic walking isn’t because you’re drunk; the exhaustion of the repetition of it that makes you want to go unnoticed, to slip into invisibility. So, you stop going out because the effort it takes isn’t worth the exhaustion. People stop inviting you out because you’re unreliable and you gradually fit the stereotype of what it is to be disabled. But what if you don’t want to? Because being that isolated is no fun, take it from me. It’s all too easy to fall into introspection and forget how to socialise (despite what you posted on Facebook last night). What if you want to do something, anything to connect? Well, therein lies the problem…
Suddenly opinions on you become polarised – you’re either a scrounger or a superhuman, and sometimes I don’t know which is worse.
Four years ago, I fell in love with the aerial arts. I was lucky enough to participate in a production of Prometheus Awakes in 2012 in celebration of the Olympics and Paralympics. I ended up suspended in mid-air 30 metres above ground with many other disabled performers. It was one of the most incredible events I have ever experienced and when I was invited to a Legacy event in aerial arts the next year I jumped at the chance. Since then I have trained and performed in the aerial hoop whenever I am able. And this is where things get complicated for people. Where their expectation doesn’t meet my reality. It does seem odd that I can have problems walking but hang upside-down from one leg with no trouble, I will admit. As for explaining the seeming contradiction of fatigue and exercise – forget about it!
Ultimately it is, like most of my life, a question of checks and balances. I manage my energy as best as I can; the hoop requires a lot of upper body strength which compensates for my weakening legs and prepares me for future life in a wheelchair; the artistic side helps engage my imagination and fire my creativity. All in all, it gives me a life rather than just an existence. Surely there’s nothing odd or unusual about that? And yet, still there’s that residual guilt; that need to show the disability. Because raising your head over the parapet is just asking for it. Suddenly opinions on you become polarised – you’re either a scrounger or a superhuman, and sometimes I don’t know which is worse.
Everyone knows a scrounger, right? It’s someone up the road, opposite your nan’s or a friend of a friend. They’re on disability and they go on foreign holidays, have satellite telly and are always down the pub. It’s such a shame you’ve had so much trouble getting your benefits when people like that are abusing the system.
Except that disability benefit fraud stands at 0.4 per cent by the government’s own statistics. That is 40p in every £100 lost to fraud. I’ve lost more down the back of the sofa! So maybe these people have disabilities that are not immediately apparent after all and they just want to have a normal life. Maybe they don’t want to conform to society’s expectations and act ‘disabled’ because that means being cooped up on your own and how is that any better than being in a cell?
Then there’s the flip side to that. When somehow the very act of trying to participate in life makes you ‘brave’ and ‘inspirational’. When ‘my mates know all about you’ is said to encourage you. When you enter a room, and wonder if you’re the only one not hearing the fanfare. It can be acutely embarrassing when you know that your disability is the only reason anyone thinks this anything more than normal. It is also disconcerting being put on a pedestal. I don’t know about anyone else, but when someone holds me up as a good example, I just want to turn around and moon them!
I think this is the crux of the matter really. We have enough hang-ups as it is as a species. Please don’t give us any more. All it requires is a willingness to see the person and get to know them. Yes, it might be frustrating to explain MS again but I’d rather do that and admit my love for musical theatre than just be ‘invisible.’