Living with additional needs is challenging. Living well with additional needs can seem impossible.
Picture the scene:
You are going down the street. Every step or push feels like such a challenge. Every effort feels like the last. Then you hear a familiar sound; that clink, clink, clink of skin against rim and then, you see someone else on wheels effortlessly breeze past you.
And you watch them disappear into the distance – and think, how?
When I was young athlete with Cerebral Palsy Sport – I got to interact with experienced athletes who had lived with Cerebral Palsy for a long time. Athletes like Stephen Miller – who used to do football as part of his warm up!
It was like magic – pure magic.
Except it isn’t really.
People who have knowledge and use it in fantastic ways have always been accused of performing magic.
The archetypical wizard has always been seen as the old man with a long grey beard (hello Gandalf) and this is because we associate age with wisdom, and we associate wisdom with knowledge, and knowledge with magic.
Magic is only ever that which we don’t yet understand.
The great thing about the internet is that is hive of information for niche subject such as rare conditions and unique circumstances. So always google everything – just to see what you can find.
For example – there is an organisation specifically for teenagers with Cerebral Palsy (how cool is that!) – you can access it here – http://www.cpteensuk.org/
Here at ED, we’re particularly into sharing knowledge that you might find useful. Here are some of my favourites:
The DayBag is really one of my favourite magic granting collections. It prepares you for so much and gives you confidence to go at life.
You can read our full Quokka Bag here. But here is the headline – Quokka is the third pocket that you need.
There are so many different sources of information that are now so easily accessible. Use them. Facebook groups particularly, can be great for answering specific questions that you. Scope Community is another good source.
Living well with additional needs can seem like magic – it doesn’t need to be.
The first thing people notice is the wheels, then they notice the blue glasses and they may get to what I am wearing, but not always.
Living with a long-term condition that creates additional needs, usually means one thing – people notice you. But they don’t notice you because you want to be noticed, they notice you because often they can’t help but.
You don’t want to be, you’re probably trying your hardest not to be; but that doesn’t matter. People look, they stare and they also probably say something. Something that probably makes you feel deeply uncomfortable but you have to laugh off.
You just want to be faceless ghost in the crowd, because you’re a commuter, a parent or a friend. Those immediately apparent things, they are not you. You read, you write, you sing or perhaps you just like sleeping.
Notice me when I want to be noticed; but the rest of the time; I just want to be anonymous.
I know that sounds like an odd thing to say; but it’s about having a voice of your own, about me being in control of the conversation.
Recently I had interesting experience; I queued up to board a plane and I just queued up.
There was no fuss, no hassle, I was just another person in the crowd and I loved it. I had anonymity. The very thing that I had been wanting all my life and never knew it. So I have spent a bit of time thinking about how I arrived at this point and I thought I’d share.
You might not agree but hopefully it should get you thinking….
Anonymity is all about planning…
Travelling on a plane for me, means ensuring that no one forgets to put my chair in the hold!
The standard guidance says to book your assistance 48 hours before. But as with many other forms of assisted travel, it is perfectly acceptable to just turn up (although I would suggest otherwise).
If you do decided to take a spur of the moment trip, miss a flight (I have done this) or have to take the long way round, just make sure that you arrive in plenty of time. Airports can usually accommodate you so long as they know you are there.
My top tip is actually to always leave yourself a buffer. If you have to get a train, all manner of things can befall you. The train could be late, they could be late getting you off and maybe it could be cancelled all together.
If you are there in plenty of time, the rules actually state that they have to do their best accommodate you – you’re entitled to random trips.
For more info on booking flights see: https://ethosdisability.com/wheelchair-flight-guide/
Having the right mix of products can make a big difference.
Sometimes we avoid thinking about problems because they cause anxiety and reservations. But thinking about the potential problems that you might face is a road to possible solutions.
For example, I don’t like putting things in my pocket because it can be hard to get them out again!
So I have started using Quokka bag as man purse –
If it works for Ragelio – it works for me). Read our full review of Quokka here. You can buy Quokka here – http://www.bettermobility.co.uk/catalog/product.php?CI_ID=2734
But for me hand luggage is a problem that I had to think about – I have all the wheels that I can handle, so why would I go for a wheelie?
Nah I need a Cabin Max because it keeps my hands free –
I always find my smartphone to be a important tool. When I’m flying – I always have my boarding pass on my phone ready. Less paper is not only better for the environment but also less fiddle things to mess around with.
Planning and products are the keys to becoming Anonymous….