Monday, 16 April 2018

I Don't Belong In This World


I don’t belong in this world.

By this, I don’t mean that I hate the world, or anyone in it. I love or have loved many people, some still alive, some not. And while sometimes I’ve shunned the world and held myself aloof from it for my own self-protection, yet at other times I’ve felt huge pity or compassion, even aching sorrow, for the world’s inhabitants and whatever pain they’re suffering, and I still do.

I also love the world’s physical beauties, its forests and sunsets, beaches and waterfalls, sweeping mountains and ever-changing seas. I even love many of its manmade splendours – feasts of colour and light, music that transports me, or the many architectural wonders of the world, especially old buildings, archways, hanging stones and other ancient sites.

But I’ve never felt like I belong here.

This not belonging has many layers or facets to it. There are spiritual facets – I know this isn’t everyone’s thing, but it is mine. It has nothing to do with what anyone else believes or doesn’t believe, but rather with a series of personal understandings I’ve gained over the years. Many years ago, for instance, I was in the women’s spirituality movement, but left because of its focus on Mother Earth and our female bodies – something I just do not feel that connected to. And for much of my younger years, I experienced something I could only describe as a ‘butterfly in a jar’ feeling. Then one day I realised it was my spirit yearning to be free. My true home, I know now, is with the Divine. One day, when I’ve done all I’m meant to do in this life, I’ll get to go there.

But it goes beyond the spiritual. I find myself repelled by many of the values that rule the world. Over and over again, I see honesty, integrity, decency, basic civility and even common sense being sacrificed on the altars of Ego, Greed and Political Expediency. Whether it’s in the political arena or the personal, I see so many appalling behaviours, and constant attempts to justify them by blaming the victims or some conveniently horrible ‘enemy’.

This is a world where there’s supposedly ‘not enough money’ to ensure decent incomes, housing, education or medical care for all, yet somehow there’s always enough money to go to war. A world where if you’re black, you can be arrested for sitting in a coffee shop waiting for a friend, or shot at for asking directions, but if you’re white and rich you can literally get away with rape.

And then there are wars, and pollution, and a greedy ripping out of the world’s resources without thought for the future, the capitalist hegemony that knows the price of everything, but the true value of nothing. And yes, I know there are those who fight against these warped values, but on the whole, the good people are not the ones in power, and even where they are, they’re sailing against the wind. I despair for the world, I truly do.

There’s also the effects of my physical disability – an acquired thing, yes, but it’s meant that for most of my adult life paid employment has been minimal to non-existent, and I’m now pretty much unemployable. Ditto for education, and any kind of community involvement. People rush off daily to wherever, while I stand apart, and isolated. (And poor, of course, something else that separates me from most others.)

Being a writer also means standing apart from society to some extent anyway, being an observer rather than a participant. Not to mention, when I have had jobs, I always felt like I was ‘wasting time’, and not doing what I felt I was ‘meant’ to be doing, ie writing.

But if I was simply any of the above, I would still be able to find a sector of society I’d fit into and be regarded by all as just another part of humanity, even if some disagreed with my political or spiritual opinions, or disliked what I wrote, and so on. But I’m also autistic. And as an autistic, I feel at odds with the entire world on a daily basis, its precepts and practises that just make no sense, and the constant slamming up against unspoken rules and social expectations. Even after decades of learning social skills, this is still a regular occurrence for me, and, I suspect, for most autistics. It’s the ‘square peg in a round-holed world’ feeling.

And while we autistics now have our own community, it’s one that most of the world seems to think shouldn’t exist. We’re seen as less-than-human, or even ‘monsters’ or a ‘disease’, and anything people do to us is considered fair game by most. The usual rules of decency do not apply to us.

So I’m alienated most of all, perhaps, by how we get treated, a mistreatment which ranges from simple ridicule through forced normalisation to outright murder. Not to mention the do-gooders who think they’re being ‘nice’ to us but who reek of fake-cheeriness or pitying inspiration-porn, the parents who never listen to us, the professionals who pathologise us, the teachers who don’t grasp just how different we really are, the media who demonise us… The world makes it plain that it only grudgingly tolerates us, at best, and at worst actively seeks to eliminate us. 

So no, I don’t feel welcome on this planet, or that I belong here. And given all the above, I think this is understandable.

Monday, 2 April 2018

I Want To Go Back


I want to go back.

I want to go back and find the little girl I once was, the one who would spend long hours on the swing, going higher and higher, then leaning back to watch the sky, because it felt like she was flying, like she was free. The little girl who loved to roll down the hill, dizzy with sensation, or whirl around and around till she fell over laughing. Who could be transported by the scent of that same grass freshly-cut, and the smell of bacon on Sunday mornings, and the smell of hot tar on a summer’s day when it had just been raining. The little girl who loved ballet, and who would put on a record and throw herself around the room, leaping and pirouetting, even though she wasn’t very good at it. The little girl who devoured adult encyclopaedias, because the kid ones were just too limited, and who first learnt to draw from copying the illustration on a book cover. The little girl who would stand in the wind and feel cold go over her skinny little body, and shiver with a kind of thrilling aliveness, so that she wanted to laugh and laugh, and just move in her body like it belonged to her.

I want to go back and find the teenager who would draw endlessly, read endlessly, but somehow never get around to doing her homework. Who would lie in bed at night and look out the window at the stars, and think about God and life and love and The Universe, and wonder who or what was Out There, and what it might be like to go up in a spaceship, and a thousand and one other things. Who would stim, sometimes, though she had no idea, yet, what she was doing, or even, yet, fully grasp that others didn’t pace or rock or jiggle their bodies like this. Who could make silly jokes and laugh till she just about cried, giving herself over to the laugh completely. And who still sometimes danced, when she could, if no-one looked, if no-one laughed. But mostly, she just dreamed, and drew, and wrote the occasional poem, and felt at odds with the world, without really knowing why. Who didn’t know herself yet, but managed to be that self anyway.

I want to go back.

I want to go back and find the young woman, who, when her child was in school, would wander the streets of Auckland, solitary and content, following an internal flow no-one else could understand. Who would drink in bright colours like they were her lifeblood and feel a thrill throughout her whole body when she found some old, neglected, quaint corner of city architecture. Who would climb Mount Eden and find a quiet spot away from all the tourists, lie down in the grass and watch the clouds go by. Who wrote a lot of fervid poems, because she was trying to grasp something, trying to understand the crazy world she found herself in. Who immersed herself in studying all manner of things, in pursuit of this same objective, following one special interest or another, for as long as it fascinated her. The young woman who would sometimes put on music and draw the curtains so no-one could see, then dance and dance, just because she felt like it, just because it made her feel free.

I want to go back and find the older woman, who, in recovery from an emotionally abusive relationship, immured herself in the countryside and wrote and painted and hardly spoke to anyone for days at a time. Who didn’t even have a TV, let alone a computer or the Internet. I want to feel how she felt, the rhythm of her days, the naturalness of how she moved from one thing to another, learning again how to hear the song within. Because she was freeing herself of a dark shadow that had blighted her life, and re-discovering her true feelings, her true needs, once again. And who still sometimes danced, late at night with the music up loud and the curtains closed, even though she had known for a long time that she was a lousy dancer. 

I want more, even. I want to let her speak out, as she hardly ever allowed herself to, to reject those who would use and abuse her, to not get sucked in by other people’s games or agendas, to not give the manipulators and the time-wasters and the emotional leeches one minute of her time, or one ounce of her essence. I want to let her do and say all the things she once thought of doing and saying, but was too scared to, or didn’t think she had a right to, or was told she mustn’t, or got yelled at for saying or doing, so she stopped. I want her to walk away from anything and anyone that doesn’t nourish her, as she should have done all along, to have the courage to go her own way and choose her own path.

Because in spite of all the angst, anger, confusion, terror, anxiety, and raw aching sadness she felt, and a self-loathing deep as the ocean, in spite of all that she went through, she harboured within her a pearl beyond price.

So I want to go back.

But I don’t need to. Because she’s already here, inside me. 

And I just have to let her dance.

Tuesday, 27 February 2018

I'm Tired Of Health 'Advice'



Most of you will know that I’m not only autistic, but have CFS as well. This means that, like other disabled people, I’m prone to receiving unwanted and generally useless advice from just about anybody I might encounter, of the ‘have-you-tried-this-weird-cure’ type. I say ‘useless’, because if it really did cure our disability, we’d already have done it. And I say ‘weird’, because a lot of the suggestions fall into the outright woo category. (‘Light therapy’, anyone? Drinking seawater? No?) I’m not the only one fed up with this – I’ve seen some brilliant memes lately on Facebook by disabled people on the same subject.

I honestly find it pretty insulting. There’s an assumption implicit in their eagerness to ‘help’, that we really don’t have the intelligence to think of these things for ourselves, or that we’re somehow too lazy and/or ‘invested in staying sick’ to ‘really try’ to get better. It doesn’t seem to occur to them that we might already have tried everything we can afford (plus a few things we really can’t) to ‘fix’ ourselves - including at least some of the woo-type stuff, because why not, when we’re feeling desperate? And the longer we’ve had the condition (in my case, over thirty years), the more likely it is that yes, we’ve tried that, and that, and THAT, and umpteen different other things as well. Or we already know that some things are exactly the wrong things to do for our condition (eg people urging vigorous exercise, when it’s the last thing CFS people should do), because, like, you know, we’re the ones who actually live with this, so we’ve had to find out about it. But no, somehow, they know best. Go figure.

What really amazed me, however, reading the responses to the Facebook memes, was how many people jumped in, mostly the non-disabled but not always, to excuse the people giving the advice, as ‘only trying to help’, and either saying or implying that we should thank them for ‘caring’, no matter how impractical, ill-informed, tiresome or just plain stupid their ‘help’ is. To which I can only ask the question – WHY?

Why should I thank someone for insulting me? For thinking they know better than I do, what I should be doing, how I should be managing my condition, or my life, better than I do? Why should I be grateful for this? And how is it ‘caring’, when they don’t even stop to ask what we REALLY need, or even what we’ve already tried?

The underlying attitude seems to be that we should ‘be nice’, ie stroke their egos. But frankly, I’ve already wasted way more years than I’d like in propping up other people’s egos, and simply refuse to do it anymore. These days I’m far more into speaking truths, even the unpalatable ones, and I make no apology for that. I also sense an unspoken ableism in those comments, ie that we should be ‘grateful’ for anything that others do for us, because, you know, we’re crips and all. I’ve wasted enough time on enabling that attitude too.

There seems to be several ways people’s egos get entangled in this need to offer ‘advice’.

1) They want to be seen, and/or see themselves, as being ‘kind’ and ‘helpful’, even when they don’t really know anything about a condition. That’s not caring, it’s patting yourself on the back, or trying to get others to, puffing yourself up – “look at what a good person I am!” Sorry, not going to participate in that game.

2) They feel uncomfortable around the disabled, and don’t know how to simply talk to us. So they jump in with random ‘advice’ instead. But really, this is just another way of dehumanising us, another form of ableism. Does it ever occur to them that we might like to talk about other things?

3) They think that if you get sick, it’s somehow ‘your fault’, and you ‘just need to buck up your ideas’. The thinking is “well I’ll never have that happen to me, because I take care of myself”. But illness and disabilities, like poverty and homelessness, can end up happening to anyone. All it takes is one car accident, one random genetic disease popping up in our later years, one period of severe stress that breaks something in you that can’t be mended. No-one is immune. To think otherwise is to not only deny reality, but to regard the disabled as belonging to a sub-class of ‘people-not-like-me’.

One further point - for those who still think that we disabled should ‘make nice’ when offered this not-so-helpful advice, I would also like to emphasise that we often just don’t have the spoons. We have less energy, and more things to do with it, and it’s harder for us to do them, than the non-disabled. So why should we have to waste any of our precious spoons on ‘making nice’? Personally, I just get irritated, or even really, really angry.

So if you meet a disabled person, and you REALLY want to support them in some way, try asking them ‘what can I do for you?’ Or, ‘do you need help with anything?’ That will go much further, and earn you more brownie points, than unsolicited and unwelcome advice, believe me. Because I’m done with gritting my teeth when people implicitly insult me. The world’s a crappy place, and I’m struggling to survive it. I don’t have time to prop up anyone’s ego.