Disability is incredibly irritating. I mean, it’s irritating having a disability, but for me, the word itself is irritating, which is ironic given I am a Co-President of the Don’t DisAbility Society. And despite our name using a pun to point out exactly what irritates me, I still don’t enjoy saying our name. Within society, we tend to stick with the word difference, not disability. Disability simply sounds negative. What I have learnt the most from the Don’t DisAbility Society and being a ‘disabled’ student is that disability isn’t just someone in a wheelchair. Even this week, when I raised field trip accessibility needs with senior figures at Streatham campus one of them said, “Oh, you mean for people in a wheelchair?” Yes, Professor, of course, I am badgering you about why the middle of the bloody rainforest isn’t wheelchair accessible. Disability includes chronic health conditions, mental health conditions, brain injuries, learning differences, sensory impairments, physical disabilities and, yes, of course, this includes wheelchair users. I fall under the categories of obvious physical disability and chronic health condition. But even ‘disabled’ people can be ignorant about disability. When I started university, I was nervous about joining Don’t DisAbility because I didn’t think I was disabled enough, despite using a walking stick. Some people call this denial (I call de Nile a river in Egypt).
It might surprise some people, but had you asked me two years ago, “Are you disabled?”, I would have answered no. Saying that, today I would probably also answer with, “No, the stick is just for show so I can get a seat on the bus”. Let me explain. I was born with chronic health problems affecting my kidneys, meaning I’ve now endured at least 29 kidney infections and a couple of bouts of sepsis. By the time I reached my teens, I had finally outgrown this (or so we thought). I only became physically disabled aged 13. I had a pubertal growth syndrome (sounds sexy, I know), called bilateral slipped upper femoral epiphysis (try saying that when you’re drunk). Essentially, I went from short to tall a bit too quickly and the relationship between my hips and femurs broke down and it nearly ended in divorce. So, if anyone says puberty hit them hard, they may be speaking more literally than you think. By 16 I had osteoarthritis in one of my hips, which was severe by aged 18 and with a couple of slipped discs to add into the mix something had to give.
Eventually, aged 19, a couple of months before starting university, I was using walking aids on a daily basis. At school, despite having been in pain almost every day from the age of 13, I could hide my condition. Therefore, in my eyes I wasn’t ‘disabled’, or at least I didn’t want to be associated with the negativity surrounding the word. Something that will shock some and confuse others is how much I get asked, “What’s wrong with you?” This is shocking because in my eyes there’s nothing ‘wrong’ with me, I just have a difference. It is ok to ask, “what is your condition/difference?” Others will be confused that this is shocking because it is used so commonly in everyday language. I’ve even had academics say it to me. When I get asked, ‘what’s wrong’ with me it reminds me that in some way I am not equal and how much I hate having an obvious physical disability. Having said this, having an obvious physical disability makes life so much easier when it comes to speaking out and accessing help in comparison to hidden conditions. But having been asked, ‘what’s wrong’ with me, so frequently, I have come up with some unique responses. My personal favourites include getting struck by lightning, got hit by a bus and best of all; I stalk people who show a keen interest in me.
Whilst writing this piece I have reflected a lot on my personal experience and thought about how I am perceived. I’m probably most known as being chatty, confident, and funny (sometimes even on purpose). They say laughter is the best medicine, for me that is particularly true. Last summer I almost died from septic shock having only felt unwell for a couple of days. And whilst it was a truly horrific experience, amongst the delirium, an amusing memory stands out. At one point, I had a doctor and nurse on every limb trying to access my veins for the vital antibiotics. My skin was burning even with a light touch, but I was being physically restrained. After what felt like a lifetime of being slashed with swords (obviously just minuscule needles), the lead consultant finally succeeded by stabbing me in the ankle. And at that moment, I lurched forward and yelled at the top of my voice, “You holy f**ker!” My dad responded with, “Yep, she’s back to normal”, and the medics laughed.
I hope that I am perceived mostly with my positive attributes, but at the end of the day, I’m simply angry. I am angry that the first impression everyone at university has had of me is a disabled girl. I am angry that I constantly get asked about health before my work or activities. I am angry that I was nearly robbed of my life and have to live with the physical and mental consequences on a daily basis. I am angry that my peers whose disabilities are so much tougher to live with than mine are less angry than me. Most of all, I am angry that almost every achievement I have reached over the past 8 years has been met with, “hasn’t she done well given the circumstances?” But instead of letting this anger eat me up inside, I use it to prove that I am equal. And in doing so, I have achieved far more than I would have otherwise and for that I am grateful. So, no, I haven’t done well “given” the circumstances, but in spite of them. I have done well. To quote my mother. “Life has handed you a pile of sh*t, but your pile is a lot smaller than some people’s, remember that.” My advice for anyone going through a tough time facing disability, health conditions or any other adversity is that it’s ok to be angry. You’re allowed to be angry but don’t let your anger or difference define you. Don’t use your adversity as an excuse, use it as a motivator. To quote my predecessor, “Use your difference, to make a difference.”