Spoiler alert: Being disabled means living in a society that wasn’t designed with mine or other disabled people’s needs in mind.
That first sentence may sound rather harsh but in reality very true, there is no other way to describe it from a disabled person’s point of view – It can create difficult situations, and dealing with those is a steep learning curve – a learning curve that, assuming you’re non-disabled, you probably won’t have any experience of.
Happiness – I have found is a number of things, from finally accepting my disability/impairment, it’s not like it’s going anywhere I have muscular dystrophy for life unless we miraculously find a cure, plus learning to love myself, it was a long and hard journey I battled with for many years and still do at times but far less these days.
It’s also just finding your people – I use humour a lot partly to break the ice and yes sometimes it is free entertainment for me. I think it’s hilarious just watching people’s faces and reactions you can judge a lot by someone’s first reaction. I’m always watching to see how they’ll react. If I say something like ‘I’m blonde and disabled you have no hope’ or ‘ I have my own seat but thanks’ It’s a good sign if they feel relaxed enough around the concept of disability to laugh it off, but if they start trying to apologise, I know it’s going to take a while for them to get past their awkwardness.
Being disabled gives me no choice but to pay attention to the warning signs around me. If someone tells me very enthusiastically as soon as I meet them that they’re training or have been a carer, they’re probably just seeing me as a disabled person that needs care more than as a friend to begin with. It’s hoping that they don’t make a snap judgement about me as I’m not a judgemental person myself, I have been stung in the past by people I thought where friends I learned that keeping some people at arm’s length is okay.
If someone just isn’t one of your people you will know, as my mum once said to me ‘if everyone liked you your doing something wrong’. It’s often not their fault or yours it’s just one of those things, but if being around them makes you unhappy or uncomfortable, you owe it to yourself to do something about it. It doesn’t need to be dramatic or rude, but you either need to find a way to distance yourself, or talk to them about what’s bothering you.
Communication– is key especially when you rely so heavily on people’s help, having muscular dystrophy a progressive muscle weakening condition I need help with everything from going to the toilet to wiping my nose so finding that balance of asking for help without seeming rude or demanding.
Now? I can tell people what I need in maybe a hundred different ways it does depend though how well I know them and them me, and a thousand other factors. I still get it wrong sometimes today. Asking for help can be hard enough as it is because you want to be able to do it yourself but know you can’t and if your level of frustration is already high it will sometimes come across in your tone, the same goes for tiredness and fatigue our emotions are high so it’s taking a breather before asking for help.
Have a plan A & B – even if you know you will probably have to improvise. Now this is where a non-disabled person might not understand the lengths and hours that can go into planning and researching, to just be able to wheel out the door (not that I’m going anywhere at the moment!).
You can account for every little detail and get to your destination and discover the lift was broken or it has steps or no accessible toilet. Which has happened at my best friends wedding a few years back the lift was broken so the other wedding guests had to carry me and a 98kg wheelchair down 5 steps just to go to the reception. As a result, of so much planning my organisation skills are very good!
The obstacles in our way usually aren’t our fault – there are barriers everywhere for disabled and non-disabled people, just the barriers the disabled community face are very different – 90% of the time, it’s down to the stupidest of things like no-one bothered to put in a lift or added 3 steps to the front entrance.
That’s not my fault. That’s not even my disability/impairments fault. It’s the combined responsibility of the architect who designed the building and the laws that allowed it to happen – My adult arch-nemesis the historical genius that invented stairs!
It’s okay to feel sorry for yourself – once in a while – Many famous disabled people are often described as optimistic and yes I’m sure that is the case for some. But when you have stupid sayings like “the only disability in life is a bad attitude” you need a little optimism to become known in a world that is happy to see disabled people as nameless objects on an inspirational porn posters.
Honestly I think some in society expect us to be miserable all the time.
Yes, I do get a little frustrated doesn’t everyone? Why am I not going to deny myself the opportunity to have a tiny pity party because I physically can’t access the new in place everyone’s raving about, or because I feel a little left out when friends and family had a party without me because their house or building isn’t accessible for me.
But in the same sentence if I let myself get upset about every little unfair thing I come up against in life, I would be a blonde mess on wheels. Life is going to throw sh*t at all of us it’s a part of being human it’s learning to shrug off some of those negative emotions especially if there is nothing you can actually do, plus it’s taking the good with the bad.
The trick is learning when feeling sorry for yourself is healthy and when it’s just making you feel worse. It’s going to be different for everyone, only you know where yours is.
It’s important to remember you can also learn a lot about life by looking at it from someone else’s perspective.
These are just a handful of life lessons – that might help you or you might have your own I would love to hear them. Leave me a comment.
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