I’ve been relatively lucky so far with cerebral palsy. For some, the disability demands a lot of operations and painful episodes which, for the most part, I’ve dodged.
I’ve been having physiotherapy since I was a child. A few therapists used to try scaring me into exercise. “You’ll regret it otherwise; when you’re older your joints will freeze up and you’ll only have yourself to blame.” I understand where they were coming from; they didn’t want me slacking off any time soon. I try to keep active and I still get therapy – so far, so good; my joints feel fine.
I hope they stay fine for as long as possible. My hope is that whenever I swim or stretch I’m reducing the overall damage I’m doing to myself when I get into my weird shapes (which I’d rather not know about). I tangle myself into so many strange shapes, but they’re always done for a purpose – to reduce excessive movement, or to make a task easier/quicker.
Life has always been this way. I look for easier ways to accomplish certain tasks by myself, while therapists come along and shake their heads at my techniques. I’m not sure how to sit down in a way that doesn’t piss them off. But they exist for a reason and do a good job. So long as they don’t keep reminding me that I’m going to be old one day, we’re cool.
Meth dealer. Bank robber. Stripper. Oh, the things I could be if only I had independence!
It’s hard to be a rebellious risk-taker when you’re physically disabled. My parents encourage me to do as much as possible, but their main concern will always be my safety. Of course it will. They’ve been taking care of me forever. If you spend 25 years building a house, when you eventually move in you’ll hesitate to light a candle in there.
I’m not complaining: I’m naturally cautious. But I don’t want to become so cautious that it makes me boring. Cue a new carer. A big attribute I like in a carer is a willingness to push me into new situations I would otherwise likely avoid.
There are always going to be limits, though. When it’s fun vs danger, the carer must think safety-first. When it’s fun vs the law, the law will always win.
Calm down sheriff, I didn’t say I want to break the law. I’m just saying it’d be nice to have the opportunity, the choice, that’s all. When you have a carer, you don’t want to screw him out of a job by doing something crazy, and likewise he probably wants to maintain his career in care.
Give it 100 years and our world will be so liberal that people will be viewing some of our current laws and taboos with confusion, maybe mockery. I’m trying to remain vague and mysterious in this post, but we could all be enjoying so much more freedom.
But there are many ways to enjoy life. You don’t have to kill in order to have fun, you know. Seriously, put the knife down; you’re making me jealous.
One thing I appreciate about the BBC is their yearly coverage of the Glastonbury Festival. I sometimes watch bands enthral an audience and think, “I could do that.” I guess a lot of abled non-musicians and amateurs feel the same way, only they can derive pleasure off the fact that they really could become good enough for Glastonbury with a lot of work and a bit of luck.
When I say “I could do that” I can truly believe it without feeling any guilt or regret over a lack of ambition. Of course I would headline Glastonbury if I had an average voice to work with and could control both my arms! Ten million people would pay just to watch me.
I do think I have a hidden flair for stage presence and audience interaction, but I’ll probably never find a way to prove it. Some days I feel like an extravert hiding in the body of an introvert. Ironically, I think it’s harder to stand out in society when you’re in a wheelchair. I used to be pretty extraverted, joking around with strangers and talking faster than I could think. Then I went through a patch after school where I realised a lot of people in the real world would rather avoid me, and so I focussed on enjoying alone-time instead; sometimes I wonder if I’ve gotten too good at this.
Anyway, live entertainment. When I go to see an accomplished performer excel at their chosen art, I think I experience an additional pleasure unavailable to abled people. I see a person who’s honed their ability to create something wonderful. It’s nice to watch somebody take maximum advantage of their abilities. For example, I love seeing someone going crazy on the piano. If I wasn’t disabled, I think the piano would’ve been my go-to instrument to practice and probably fail at. When I see a skilled and enthusiastic player, I usually end up living out my fantasy through them. I’m up on stage killing it and the audience is going nuts.
I wish Heaven was real. Eternal bliss, fluffy clouds, angels – it all sounds bloody wonderful. In my Heaven, Ray Charles, Freddy Mercury and Kurt Cobain are all performing in the most random festival line-up ever. Meanwhile, down the road, George Carlin is performing his brand new show in which he ponders the point of logic in a place where nothing can go wrong. And of course all my late family and friends are there, except those I didn’t like are a bit nicer (it’s my Heaven after all). Imagine, though: eternal bliss. You’ll always be ecstatically happy, and it’ll never get boring.
Then there’s Hell. It’s such a neat idea, that all the ‘bad guys’ of the world will be brought to justice. I imagine it must be great to be able to say “Hitler is rotting in Hell” with feeling and conviction.
The idea of an afterlife brings comfort and meaning to millions. I have friends who criticise religion yet have their own theories on what awaits us after death – souls and peace and the eternal. If so many people didn’t have God hammered into them from childhood, the promise of Heaven would be religion’s best hope in attracting followers.
I have a feeling that some groups assume atheists despise the thought of a Heaven. If it’s taken as fact that the afterlife is 100% real, anyone who challenges the idea will be viewed as spiteful, ignorant liars who are out to corrupt your children. I’m sure you’d find that most of us do not gain much pleasure from the thought that one day our egos and bodies will probably be lost forever.
It doesn’t have to feel frightening though. I think the best thing to hear following someone’s passing is the phrase “They’re at peace now”. You can take this in two ways: either that they’re in Heaven, or that they no longer have the awareness or capacity for pain, worry, torment – all the bullshit that comes with existing. You may argue that this is still depressing because death kills off the opportunity for good experiences too, but think about it this way: your friend/relative doesn’t care about losing that stuff. Why? Because caring requires ego, and in the absence of ego nothing matters. Of course this won’t remove the sense of loss you’ll feel, but it may help reduce it.
I guess what I’m saying is life without religion doesn’t have to be grim and scary. Just because Heaven is a universally beautiful idea doesn’t make it real, unfortunately. Remember how terrible things were before you were born? Neither do I: that’s what I think awaits us.