First things first, let’s get the elephant out of the room. Yes I am writing this with Take That’s “Everything Changes” in my head so please feel free to have it circling round as you read ahead. Think of it as an extra little treat, a gift from me to you.
There is almost an accepted understanding that there is a difference to those who were born with and those acquiring a disability and their experience of disability. Those who acquire a disability, for obvious reasons, have to spend some time coming to terms with their disability and how their impairment affects their life. Those born with a disability know no different, therefore have nothing else to measure it up against and generally don’t have to spend time coming to terms with it, it just is. I don’t profess to speak for everyone but that is generally my experience from others.
Let me remind you of my first blog that explains I tend not to play by the rules so it should come as no surprise that I don’t fit myself into the above description Welcome to The View From Down Here
I was born with my disability, although I wasn’t diagnosed until I was two years old, I have never known any difference so why did it take me until I was 20-21 years old to even begin coming to terms with it and why is it only now that I feel comfortable talking about it openly at 28 years old?!
When I began thinking about this blog and what I imagined it might contain I had never thought it might change how I thought about myself so fast and in such a noticeable way. A few weeks ago I went for lunch with a friend, we were chatting about the blog and she said something that hadn’t occurred to me before. This blog would never have been possible for me to write this time last year, even six months ago. Talking so openly about my disability has never been something I have felt overly comfortable with and wouldn’t offer up independently.
As explained previously, I was brought up in a family where my disability was never an issue and I was treated just the same as my able bodied, now 5’8”, younger sister. I went to mainstream school and although I spent some time in hospital around the age of 10 I was expected to work hard at school and do everything my peers were expected to. That being said; in my dreams I was always the same height as everyone else and I was never using a wheelchair. Even now I can count the number of times I appear shorter or using a wheelchair in my dreams on one hand. It is also a running joke with my friends from school that I remember very little from our school years. I’ve started to think recently that my brain decided to block much of that time out. Not because I had an awful time, I had some lovely friends who I’m still close with and we had a great deal of fun. I didn’t block it out because it was too hard and traumatic but because there was an underlying unease with myself so rather than deal with my difference I must have subconsciously been blocking it out. Being a young girl going through puberty is tough enough, adding into the fact you are different to everyone else physically, what that means to you and coming to terms with that adds a whole other added layer of things to deal with.
It’s safe to say when I left school and went to University in Leeds to study Theatre and Performance I didn’t quite know what I was letting myself in for. Like all the other freshers I was away from home for the first time, hundreds of miles away from my family, knowing no one and breaking out of the bubble of home life and comfort zones. As with everything I think I decided to style it out and adopt the ‘fake it until you make it’ attitude and tried to get on with it with a slightly forced smile on my face. I made a great bunch of brilliant friends who I had endless fun with and somehow managed to adopt the role of my family and home friends without instruction. I was treated just like everyone else and accepted without question. Thinking back I have absolutely no idea how they managed it but I will forever be grateful to have this group of truly brilliant people. They made me feel accepted, safe and one of the gang from the word go. Without this there is no doubt I wouldn’t have managed university life or even become the person I am today.
There came a time, probably half way through first year, where we had all got comfortable with and got to know each other pretty well. We lived the lives of typical students partying, drinking, a bit of studying but much more fun and messing about in theatres pretending to work. By this time though I had started to feel comfortable enough to let my guard down. I remember on nights out getting panicked, overcome with frustration and generally an upset mess if the venue wasn’t accessible, the taxi wasn’t accessible or I had problems with my wheelchair (an ongoing saga of drunkenly locking it and not remembering how to unlock it until I woke up the next morning where I miraculously knew how to do it!). Each and every time these new friends dealt me the perfect amount of tough love, telling me to shut up, get over it and that it didn’t matter, with understanding and love consoling me each time.
Over time, being forced to face up to the realities of what it’s like to have a disability with the help of my new friends meant I started to begin to think more about it and start the process to accept it. I might be physically different to my other friends and the majority of those around me but that wasn’t a bad thing. It got to the point where I even decided to write my dissertation on the representation of disability on stage and screen, something that would never have even crossed my mind at school let alone when I began university.
For those who have met me in the last few years, reading this might seem odd especially considering what I do for a living now. It is safe to say since working for a disabled theatre company and managing various training schemes for disabled people including the training of the presenters and reporters for the coverage of the Paralympics I have worked with many people with various disabilities. It is near on impossible to not share experiences and learn from others when you are constantly surrounded by it. Add into that, I’ve hit that age where everyone says you start to feel more comfortable in your own skin than you ever have done before, and I feel I’ve hit the sweet spot of acceptance. I’m feeling more comfortable than ever before, am happy to talk about it and will even start my own in-depth conversations about it without feeling uncomfortable. I’m not at 100% but I would say I’ve made one hell of a dent in getting closer to it.
This blog has given me the chance to think about my disability and how I feel about it. Without the love of my brilliant home friends and friends from university I would probably have never even got to this point. Having a disability, whether it is acquired or something you are born with sometimes needs to be processed and dealt with. Like a friend of mine recently explained to me, it’s like sexuality. Sometimes there are people who just know and they understand their own sexuality themselves from the word go, then there are others that although they are born attracted to the same sex it still takes some time later in life to come to terms with it. Acceptance doesn’t just need to come from outsiders; often we need to understand how to accept ourselves.
‘The sweet spot of acceptance’ had me blowing my nose very hard because, already I was so moved by the simple honesty which taught me a lifetime’s lessons in a paragraph, I could not see but I was determined to read to the end.
Brave, straight to the point, personal, real and extraordinary education from life lived by someone I would not want to live without. Respect! I mean!