Emily’s blog addressed disability from a siblings perspective as her youngest brother lives with Duchenne muscular dystrophy.
For those of you that are relatively new to my blog, then this post may make a little more sense as to the title of my blog. And for those of you who aren’t… well I think this will still relate.
When you have a sibling who has a condition such as DMD, you’re ‘normal’ isn’t the same as everyone else’s ‘normal’ your age, and that doesn’t really change through the various stages of life no matter how old you get. As I have previously mentioned, this blog is not about a doom and gloom, negative attitude towards what is a pretty shitty situation. I personally feel that there is just far too much of it out there. You try and google something actually helpful, that isn’t full of negative statistics about DMD and you’ll see exactly what I mean. It is about being honest, real and hopefully finding a little bit of light about the reality of this from a siblings point of view.
I write ‘normal’ in inverted comma’s because what is normal? Can you define it? I can’t. Because everyone’s version of what is ‘normal’ to them is different depending on their life experience. The first time I ever heard this was from an RE teacher Mr Weir many many years ago (a few more years than I’d like to admit!). He was an amazing teacher, and this is just one of the many things he taught us that resonated with me, and has genuinely stuck with me over all these years. In a lesson one day people were messing on as they do, when someone shouted to someone else that they weren’t normal, which of course sparked a bit of a debate to say the least. But from that lesson Mr Weir spoke about how we can’t define normal, because it’s definition is completely different to each individual. And it’s true. But it is something that has stuck with me ever since, because I had always felt being young that our ‘normal’ was so abnormal that it felt like you had a big sticker on your forehead. Turns out there usually on your back not you’re forehead, and normally stuck there by a fellow classmate with a picture of a knob on it.
The truth is that the ‘DMD normal’ isn’t the same as everyone else’s. But it is our ‘normal’. Our life as we know it… and that is pretty damn unique. Most people and families can go for a meal out… last minute lets just go and pick somewhere random. That isn’t the case for us though. Because then what if that place isn’t accessible, or if they don’t have anything that can cater for a soft diet, and so the list goes on… so our ‘normal’ is the fore planning into a meal out, checking places are suitable and doing lots of research before anything is ever booked. And sometimes… you might get there and discover that after all that research it still isn’t suitable. But that’s fine, because that is what we know. For me this has spilled over into much of my adult life. I found it really strange just walking into places without checking for accessibility when I first when to uni. It got easier as time went on… but even now I’m much better with a plan, and I still find myself pointing out areas which are clearly not going to be suitable for a wheelchair when it states that it is accessible. Partly because that for most of my life things are well planned because they have to be due to the circumstance, so that is my ‘normal’… and the other part is just because I’m a bit (ok, maybe a lot) of a control freak and like a plan. Last minute isn’t really my thing, give me a list and a plan any day!
The other side of it is that I have seen times where somewhere new and trendy has opened up and Joe really wants to go, but the accessibility isn’t right. So, in we go with a 10 bit ramp and use random pieces of furniture to make it accessible for him. It is what you choose. Don’t get me wrong it can be frustrating, for all involved (and not least Joe) when he can’t get in or some people’s version of accessible is questionable to say the least.. but we go in and make it work no matter who we piss off (mostly many a waitress for rearranging their furniture!) Would I have the confidence to do the same if it was me? Hell no. But I don’t give a shit when it’s about making it work for Joe. Yes, there is such a thing as being politely rude… turns out I have it down to a fine art!!
The fact is that instead of looking at the majority of people and society’s idea of ‘normal’, embrace your own. I’ve always been about being different, but I feel that especially these days with social media used for everything, people are so busy comparing their life to others that they make themselves feel that their life isn’t ‘normal’ or good enough. I’m guilty of this too. But you know what, I wouldn’t change my ‘normal’ for the world and I am absolutely fine with that, so you should be too.
Further reading
- BLOG Just a big kid at heart by Emily
- BLOG The Forgotten Voice by Hazel
- Help and support for siblings
Wave gain Orphan Drug status for WVE-210201
