Inspired.

Being referred to as an inspiration should be a compliment. It means your influence has impacted others, caused them to change their behaviours, or take action on a particular problem. It means you are respectable, even exceptional. Unfortunately, as any disabled person will tell you, this isn’t always the case. Being called an inspiration can be flattering, uplifting, and empowering, but it can also be embarrassing, patronising, and downright ableist.

Recently I went for drinks after work with several colleagues, my boss, his boss, and the boss of my boss’s boss. It was a fairly small and quiet affair, with the alcohol flowing perhaps a little too freely, and all pretence of professionalism left behind at the office. As the evening progressed I ended up in conversation with Supreme Leader Debs (the boss of my boss’s boss). We had discussed a few elements of work as I was still fairly new to the team, but conversation naturally drifted towards our activities outside of work. I mentioned the whole writing thing very casually, as well as my activities in support of equality and inclusion both in and out of the workplace, and also that I was soon to be married. After listening to me talk about my very full life, all of which happened outside of a full-time job while living with a debilitating chronic illness, she told me I was an inspiration. Was I uncomfortable in any way with this? Quite frankly, no. I was actually pretty excited.

Just a few days after that I paid a quick visit to the corner shop to pick up a few essentials, nothing major, and nothing as exciting as the glamourous lifestyle I like to project on Instagram (hey, we’re all guilty of that, right?). An older man at the self-service checkout next to me tapped my arm and told me I was a true inspiration, very loudly and very much in earshot of everyone else in the shop. I stammered an awkward thank you, knowing he meant well and not to offend, and tried to hide my beetroot-red face from the rest of the shoppers. I was extremely uncomfortable, and would have made a quick exit had it not been for the fact that I hadn’t yet paid for my groceries and would have been arrested for shop-lifting.

Two very similar things had been said to me, and yet they evoked two entirely different emotional responses. Why?

There are several factors to consider here. First of all, Debs was not a stranger; she knew me and my capabilities, and could make a much better judgement of my lifestyle because of that. Secondly, this was said in one-to-one conversation in a noisy pub, not projected loudly across an entire shop. The fact that a little alcohol was involved in the first instance may well have reduced social inhibitions on both our parts, making it even less likely to be embarrassing for either party. Perhaps most importantly of all was the topic of discussion at the time; I wasn’t just doing something as mundane as getting groceries, but was talking about essentially having two jobs and quite the double life, managing to perform well in both, all while I was ill. Put blatantly and a little arrogantly, this is no small feat.

It can be hard not to feel patronised or even a little exploited when a random stranger declares you worthy of knighthood for existing, loudly saying as much in public. I know that no offence was meant and that’s why I try to be patient, just smiling and nodding before carrying on with whatever I’m doing. At the same time it’s almost impossible not to be annoyed at people’s ignorance and lack of empathy; it’s not like this is the first time this topic has been touched upon. Nor, I’m sure, will it be the last.

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.