Disability & Me
‘Disabled’ is a label I’ve had for almost 30 years, and I’m still struggling to define exactly what it means to me.
I was recently asked if I’d be interested in getting involved in the setup of a new employee network at my place of work for employees who identify as disabled or neurodiverse. Whilst I was pleased to be asked and thought this was a fantastic idea — something that had never been present at any of my previous places of work, it prompted me to reflect on my own journey as a disabled person, which I’ve never really done before.
‘Disabled’ is a label I’ve always had, but one that almost 30 years on, I’m still struggling to define exactly what it means to me. For a long time I’ve explained it as — I can do most things the same way as everyone else can, it just might take me a little bit longer.
I’ve suffered from cerebral palsy my whole life, but, I’ve never really felt it as being an ‘identity’, it’s just something that’s always been with me.
Without going into a huge amount of medical detail, Cerebral Palsy is the name for a group of lifelong conditions that affect movement and coordination. The condition ranges in severity, so two people can suffer from CP in very different ways. It is essentially a form of brain damage, caused by a lack of oxygen at birth and is more prevalent in babies born prematurely.
I was born 12 weeks premature, weighing 2 pounds 7 ounces and wasn’t immediately the odds on favourite for survival. So the fact I’m sitting here typing this 29 years on is a small miracle in itself.
I am fortunate that in my case, my condition only really affects my walking, balance and to a milder degree the dexterity in my hands, which hinders my ability to grip certain things properly. For other sufferers of CP, they may have other symptoms that include affects to their speech, ability to swallow or problems with their sight and/or hearing to name just a few.
Studies have shown that on average, within the first seven seconds of meeting someone, a person will have a solid impression of who you are. When your legs carry you into a room of new people looking like you’ve just fallen out of the pub, regardless of the time of day, it can feel like you’re starting on the wrong foot. There are a number of events in my life that I’m sure you have also experienced similarly — starting a new school or college, going to University, attending a job interview or meeting someone for a first date. If truth be told, I’ve probably approached every one of those with the feeling in the back of my mind that someone is going to judge me, purely based on something I have no control over, before I’ve even said a single word. It’s something I’ve got better with over time, but certainly in my late teens as I entered adulthood, this thought plagued my mind constantly.
I recall being very unsure around the time of my 18th birthday when I started being invited on nights out with friends. The idea of being in a crowded nightclub with limited visibility filled me with anxiety more than it did excitement. I remember us all walking up the main street of clubs and bars in my hometown and a guy being kicked out for having one too many! The security guys on the door were saying to him ‘you’ve had enough mate, you’re not coming in’ and the drunk guy retorting ‘No I’m alright, I’m just a bit wobbly-wobbly.’ At that point I thought, well, I’m already pretty ‘wobbly-wobbly’ and I haven’t even started drinking, so I doubt they’ll let me in! I did once get approached by security in a bar who thought I was intoxicated, when in fact, I was designated driver that night — was pretty embarrassing for the guy who attempted to kick me out!
Although my condition is not curable, my ability to navigate life has improved greatly over the years, much in part to the fabulous people of our National Health Service and my parents for making sure I saw the right specialists who performed a number of operations on me from an early point of my life and for their constant ongoing support and belief in me. Without this, I’ve absolutely no doubt I would not be walking today.
At times I’ll think ‘I’ve got the hang of this, I’m managing just fine!’ — which will usually then result in me being brought back to reality by a quick trip to the pavement/road/floor/train platform or wherever else I involuntarily decide to fall.
In more recent times — after being a too frequent visitor of the pavement, I’ve begun using a stick as a walking aid whilst navigating my way outside. Stupidly, my old friend anxiety came for a visit and worried if people would judge me now that I had a visible walking aid on display, and even worse, ‘what if someone from work saw me with the stick!?’ The stick is retractable and folds pretty well into my bag, so I’d stupidly make a point of ducking around the side of the office to fold it away before making my way inside. The truth is, no one actually gives a shit!
I know some people worry about causing offence when asking a disabled person about their condition. Certainly from my own experience, if you have a question, ask it. I’d much rather someone ask me a question than to just sit and stare at me! However, do keep in mind that some disabled people do not like openly discussing their condition as much as others; people will share what they’re comfortable to share, but don’t pry for more information. I myself am very open now to talking about it, but ten years ago, I would have been a lot more reserved and somewhat defensive about being overly questioned.
For a long time I used to shy away from talking about my disability in an open or public setting and would only ever really address it if somebody else brought it up, but I began to realise a lot of people felt uncomfortable about directly asking a question or making reference to it in fear of causing offence or feeling like they’d ‘said the wrong thing.’ The truth is that I would much rather you ask the question than not. Many interactions in life are a learning opportunity and my hope is that by being able to openly and comfortably give information, it can make the subject of disability less of a taboo than it can currently be.
I’ve heard people ask a number of times, ‘If you could change one thing about yourself, what would you change?’ Now, with me there is an obvious answer, but the truth is… I hate only being 5'6 so I’d make myself 6ft! Living with a disability sure does present its challenges, but had I not faced and attempted to overcome these to the best of my ability, I would not be the person I am today.
Twitter: @itstheJW
Originally published at https://www.itsthejw.com on July 13, 2021.
