Sunday 26 June 2011

On Poverty

I’ve been thinking about poverty lately. It’s something that’s a problem for me, and indeed for many on the spectrum, for one reason or another. But I don’t want to analyse why so much as to explore what it feels like to be poor - something not usually mentioned.

I’ll tell you what poverty feels like – it feels like being boxed in. Walled inside your own private ‘ghetto’, behind walls too high and slippery to climb, and too solid to simply break down with a few strong blows. Sometimes these walls are like brick or stone, for you to bang your head against. At other times, they seem see-through from your side but opaque to those on the outside, like one of those two-way mirrors in old spy movies. You can see others living the kind of life you want, but when they look at you, they see only the reflection of their own prejudices and assumptions about the poor.

And you feel cut off, even if you know you’re not the only poor person in the world. It’s as if outside your walls there’s this free flow and abundancy of the energy that’s represented by money – but to you, in your little ghetto, comes only a trickle of this. You thirst for more, you hunger, you tear at the walls trying to widen the flow, but it stays a trickle. You try to find a gate, a way out, but there’s nothing. If you have a major health problem, then you’re even more cut off, as you can’t participate in so many things, or do any of the unskilled physical jobs that help to widen the trickle for some. And if you’re autistic as well, your isolation is almost total.

Over time you learn how to exist on this trickle. You go without. You give up a whole heap of things you once thought were necessary. You wear clothes until they’re fit only for the rag-bag, and then go and find yourself another set of someone else’s hand-me-downs, half-rags, to wear them out in turn. You become resigned to that aching hip you can’t afford the Osteo to fix, the cough it’s ‘not worth’ going to the doctor’s for, and the sore feet from cheap shoes. You get used to being looked down on, to having everybody from shopkeepers to Social Welfare staff talking to you with disrespect. (You never like it, but you get used to it.)

You huddle. You withdraw. You don’t even bother to look what’s on at the movies or what shows are in town, you walk past ‘luxury’ items in the supermarket without a second glance, and those nice new clothes in the shop windows get only a wistful, fleeting look. Petrol is hoarded, you don’t go anywhere much, or accept many invitations – unless it’s to other people’s places for dinner. Gyms and beauty salons? What are they? You get used to being badly dressed, un-manicured, and un-buffed. You stop looking at yourself in the mirror. Oh, and playing sports? Forget it. They all cost money up front. Even jogging requires shoes.

And unless you’re very lucky or haven’t been poor long, your home will likely be too small, with inadequate furniture, possibly substandard, cheap and crappy, or with ancient grime no amount of scrubbing will remove. Or all of the above. You know it will never appear in House and Garden – unless it’s as the ‘before’ shot in someone else’s renovation project. Not that it matters, as you don’t invite many people over anyway. You can’t afford to feed them. Your social life goes to pot.

And then you find that some regard you as lazy or stupid, saying, for instance, that you ‘make wrong food choices’, and that’s why your health is bad. The obvious never seems to occur to them – that you fill up on cheap carbs and eat budget cuts of meat because you have to, not because you don’t want to buy better. (A nutritionist once told me I shouldn’t eat mince, because of what goes into it. Well mince is cheap, so guess what I still eat.) Even vegetables can be expensive, and many of the poor don’t have the room to grow their own. And if your health is bad, it’s either because of those ‘wrong’ food choices, or because you can’t afford to see the doctor for every little thing. Or even the Big Things.

Then there’s the little matter of ‘treats’ and indulgences. Don’t get me wrong, I’m not condoning addictions of any kind, or the spending of money on pokies, drink or drugs that should have gone for rent or food to put in kids’ mouths. And I know junk food is not good for your health. But I really don’t get it when one moment people are implying you’re lazy, stupid and good-for-nothing, and in the next they demand you should be a saint, and never let a bar of chocolate, a packet of chips or a glass of beer pass your lips, just because you’re poor. When sometimes you need those treats all the more, and scrape up the money for them, just to make your restricted, drab life a little more bearable.

What’s more, some people will blame you for your plight, the ‘if they had any gumption they wouldn’t have gotten poor in the first place’, kind of attitude. But not all our life events are under our control. For me, I would credit firstly my health problems and secondly my Aspergers, for being poor. For some, they were born into it and never had a chance to escape. And yet others simply made wrong choices. Are they to be seen as worthless, for making mistakes? (Not that it matters why you’re poor, in the end, it only matters how the hell you get out of it.) To be poor and then to be blamed for it, is a cruel double whammy.

Oh, and I’ve read all the books, I’ve heard all the self-help messages - ‘Pull yourself up by your bootlaces’ type of thing. But what if you don’t have any shoes? Not everyone is entrepreneur or investor material. A lot of those ‘rags to riches’ fortunes seem to be based on the ability to manage not just money but people, and to bounce back from disasters, to relish challenges, uncertainties and the unknown. Not skills given to many, and certainly not ones those on the spectrum are famous for having. For sure I don’t have them.

I’ve even read some books and heard some ‘New Age’ types hint or even proclaim outright that wealth is a reward and a result of those souls being ‘spiritually advanced’. In other words, if you’re rich, it’s because you’re somehow better than others, but if you’re poor, you’ve got bad karma. What a lot of rot. The rich are no better as people, in my experience, than the poor. They’ve simply got more money to be whatever they are – nasty or nice - with. (It’s also a distorted understanding of spiritual advancement and karma, but that’s a whole ‘nother issue.) I’ve met some truly spiritually enlightened people, wonderful people, who’ve never had much money. On the other hand, however, many years ago my daughter had a part time job as a security guard at a racecourse. She often worked at functions there attended by many wealthy types, and was disgusted by their behaviour. In her words – “drunken vomit looks just as disgusting down a two-thousand-dollar suit as it does down a two-hundred-dollar one.” Unquote. So I’m not buying that I’m poor because of a supposed ‘lack’ of spiritual ‘advancement’. That’s bullshit of the worst kind – the ‘blame the victim’ kind.

Now I’m sure if I had plenty of money already, that I could handle it wisely. But I don’t have it, and it’s possible I never will. Past fifty, with minimal skills and qualifications, a patchy-to-non-existent work history and experience due to chronic illness, and two major disabilities (Chronic Fatigue Syndrome and Aspergers)… well, even when times were good, the only job I could find was a short-term contract subsidised by a government scheme. When the subsidy expired, so did my job. And if that was all I could get in a good economy, what chance do I have in a bad one? If I was 20 or 30 years younger, or with more qualifications and experience, or simply good health… maybe. Maybe. I’m still looking, but I’m not holding my breath.

I don’t mean this to be a pity fest by the way – I’ve never wanted pity, I find it demeaning. All I’ve ever wanted is simple respect, and understanding. But I’m also realistic. Times are hard, jobs are few, and while I know that autistics aren’t the only poor in the world, it is a fact that of just about any group, we are more likely to be poor. It’s skills, yes, but it’s also prejudice, and lack of understanding. We don’t come across well in job interviews, and we have trouble working in certain environments and interacting with co-workers. Many of those on the spectrum who do have jobs are clinging to them with all their might right now, even harder than others are, because they know they are even more vulnerable. Some choose not to ‘come out’ as aspie or autie because of it. Given the circumstances, I think that’s probably wise.

Because, let’s be really realistic here - the world doesn’t care that much about the poor, for the most part, and it cares even less about adult autistics, poor or otherwise. It would be just as happy if we didn’t exist at all. It prefers to ignore us, and if it can’t it denigrates us. Some seem even to hate us, and call us all sorts of names. And if you are poor as well, that’s a double load of shit on your shoulders. Yes, in the long term we’re going to have to force the world to sit up and take notice, to ‘move over and make room’ for us, but in the short term, we have simply to survive. I don’t have any answers, just truckloads of questions. And the biggest one has to be, how do we go on from here? How do we survive, let alone flourish, in such a world?

Monday 20 June 2011

'Speaking Autistic'

I think just about every Asperger’s Syndrome or Autistic person has experienced the frustration of struggling to communicate their reality to someone not on the autistic spectrum, and failing. It’s my feeling that there are a lot of different reasons for this.

Sometimes the NT simply fails to understand what we’re trying to communicate. Some people are too impatient to truly listen to anyone else, and just dismiss our explanations before they’re halfway out of our mouths. Others just seem baffled, staring at us in blank confusion. Some, however, seem to get it, saying brightly, “oh yes, I understand!” - and then following this up with something which reveals that no, actually they don’t. I believe this is because, despite NTs’ supposedly greater empathy, they often aren’t able to ‘put themselves in the other’s place’ if that other’s ‘place’ is too radically different to their own.

At times, if we try to explain further, we hit another barrier – that of refusal to understand. If what we are saying can’t be even remotely fitted into what the NT considers ‘normal’, they reject it, telling themselves - or us - that this “can’t be” correct, that “no-one could ever think like that”, or even that it’s “proof” of something seriously “wrong” with us. (I kid you not, it has happened to me.) Dialogue usually ceases at this point.

But as well as all this, we often fail to express our truths clearly. For some, this is due to difficulty with the physical act of talking, or with organising or ‘translating’ our thoughts/mental images into words, especially under stress. Many of us have also been made to feel so much shame about our ‘difference’ that we’ve become unable to talk about it. And some of course don’t yet know or are still in the process of understanding that they’re on the spectrum, and thus of understanding that anyone else feels the way they do, and which they’ve been told forever is ‘wrong’.

But I believe there is a deeper problem – that of the language itself being inadequate to communicate the truth of our autistic lives. Too often, even those who are skilful with words, like myself, when we attempt to describe something from our reality, are told “but everyone feels like that occasionally”. This is like saying that because most everyone has felt breathless now and again, they know what it’s like to have asthma. Or that because they’ve  had a rash, they know all there is to know about living with eczema. The words of the English language (and possibly all languages) are somehow too ‘weak’, too bland or limited in meaning to convey the totality of what it means to live with autism.

Many people, for instance, suffer from a degree of social anxiety, due to lack of social skills and/or general shyness. But most wouldn’t know what it feels like to have to struggle hugely to take in what someone is saying (due to auditory processing challenges), consciously (if we can) work out any hidden meaning and try to ‘read’ the other person’s body language, block out multiple other sensory inputs – and then work out how to respond, without too much of a time lag – all at the same time. For your average NT, all this is done without thought. For those on the spectrum, it is hard work, and difficult enough with one person. With a group, or in a noisy setting, it becomes near impossible. We invariably miss so much that many of us just give up, and end up dropping out of most social activities altogether. ‘Social anxiety’ is a pale term for the potent mix of fear, hurt, shame, embarrassment, anger, avoidance and low self-esteem that results from a lifetime of such experiences.

Some words seem to mean different things to NTs than they do to us – the word ‘meltdown’, for instance. For many NTs (in terms of behaviour rather than nuclear power stations) it means a huge tantrum. But to someone on the spectrum, it means an agonizing breakdown. Many of us on the spectrum have attempted it, but it’s very difficult to express how it feels, for example, when you’ve spent too long in a crowded shopping mall, and all the noises, smells, and visual stimulations which up till then you’ve been successfully blocking or managing to ‘mute’, suddenly can’t be blocked any longer and hit you with full force, crashing down and drowning you under an intolerable weight. How your heart starts to pound, your breathing speeds up, thinking becomes incoherent, speech impossible, and all you want is to leave - NOW. And how, if you can’t leave, or people get in your face demanding “what’s wrong with you”, or start yelling at you, you can end up screaming, crying, or even throwing things, in sheer overwhelming panic and agony, all of which is misinterpreted as a mere ‘tantrum’. Either we re-define ‘meltdown’, or we need a new word.

Some words which have been coined to describe specific problems we have are just too clinical or detached. A typical example is that of ‘executive dysfunction’, a label for autistics’ difficulty with organising their daily lives. It sounds like a boardroom out of order, or a quarrelling committee. It certainly doesn’t seem to describe the extreme state many of us are familiar with. Typically, it means that we don’t really know how to organise ourselves, and when we do try, it just seems to make things worse. Our minds reel from one tangled skein of thought or haphazard activity to another, tasks are half-done or done badly and then abandoned, schedules and appointments are not kept, and we can end up standing in the midst of an overwhelming mess, reduced to tears and on the edge of that meltdown. Others tear us to shreds for our ‘failures’, we feel like failures, and struggle to just get through each day without disaster. Imagine a life where this is a frequent occurrence, and ‘executive dysfunction’ doesn’t even begin to cut it.

And we know that there are many, many more autistic experiences or states of mind for which there are no words at all, not even inadequate ones – there are only chaotic feelings, images without words to match them, or happenings which cannot be described – they can only be lived through.

Thus whenever we try to share our truths, we’re trapped and limited by these lacks in the language. Combined with NT inability or refusal to understand, and problems organising our thoughts into words, it is little wonder then, that we autistics feel as if we are “using the same words to speak a different language” to the NTs around us, and that we have ‘disabilities’ in the area of communication skills.

And no ‘social skills’ class is going to remedy that, nor can we expect NTs to change the language for us  – we have to find our own words to describe our own experiences, as have so many ‘disadvantaged’, ‘downtrodden’ or ‘minority’ groups before us. We’re only at the beginning of the process of change for us, and it’s obvious to all of us that there’s a lot of work to do. Finding - or creating - the words to express our reality is just one of those tasks, but I believe an urgent one.

Yes, I know there are some who, even if we do find the ‘right’ words, will never change their attitudes, or only very slowly – just as there were men who rejected the demands of the women’s movement, or white people who scorned the anti-racism message. (Having taken part in both these movements, back in the 80s, I can see a lot of similarities between them and the neurodiversity movement.) Nonetheless, without even the beginnings of a ‘language of our own’, we can’t begin to communicate our truths to even those NTs who might be receptive, and they can’t begin to understand, or to change their attitudes to, or practises towards, us. And until they do, we will continue to be misjudged, misunderstood, mistreated, excluded and marginalised. And I don’t know about you, but I’ve had quite enough of that.

Sunday 19 June 2011

A bit of a grumble...

I know what i said about putting positive vibes into the world, but sometimes you just gotta bitch. Or not so much bitch, as just vent, and ask why the heck?

Why the heck do some buildings that are temperature-regulated, insist on such extremes? Whenever i go into a shop, department store or office buildings, i invariably find the following :-

1) In winter, like now, they are overheated to the max. When i first come in from the cold, it's good. I slip my jacket off, maybe my scarf, and enjoy the warmth. Pretty soon, i want to take off my jersey or cardigan too. Then i roll my sleeves up... before i know it, i've peeled off everything that can be removed in public, and i'm still boiling. I usually end up leaving the place, seeking the cool outdoors again, and having bought nothing.

2) In summer, however, the air-con is also cranked up to the max. On a hot day, it's lovely when you first enter, but soon it starts to get chilly, and then positively goose-bumpy. Again, it swiftly gets too uncomfortable, and i leave.

So why do they do this? If customers feel too hot or too cold, they will leave, and not buy anything. I know it make shopping an often uncomfortable experience for me. Also, it must consume a heck of a lot of electricity, and you'd think they'd want to keep their overheads down. [About the only exception to this, at least in winter, is The Warehouse, whose stores have very high ceilings anyway, and whose prices are so rock bottom that they would have to skim costs as much as possible. (Could explain why they're often kind of hot and stuffy in the summer too, skimping on air-con.)]

Do other people find this? And is it people in general, or only those on the spectrum who are likely to have trouble with this?

Or is it just me? Am i the only one to go through this? I am aware that poor body temperature regulation is one of the symptoms of Chronic Fatigue Syndrome, which i also have. So perhaps it's a combination of the two, or i'm truly being as 'over-sensitive' as i've so often been told. (More on this another time.) Perhaps i'm the only one in the world to suffer like this, and everybody else is fine. I'm sure wondering. What are other people's experiences?

Tuesday 7 June 2011

Should i adsense or not?

Well haven't been here much lately, in case you haven't noticed! Been busy with other stuff. But i've been thinking... is it worth my while sullying my nice clean blog with ads, or not. The Suite 101 article thing is turning out to be a bit of a wash-out, as regards earnings. So i'm thinking it might be better to put more work into my blog, and promote it, and if i have ads on it, then i can earn a little here too. I'm feeling that though i haven't exactly got the turnover yet, to warrant it, that maybe i would, if i posted more and promoted it more. Whaddya think, people? Comments would be appreciated on this issue, as i haven't made up my mind yet.

My Outlook on Life

I’ve been meaning to do a piece on my spiritual views for ages, and I will get to it soon. But first I want to say something about my general outlook on life.

The central fact anyone needs to know about me, is that I am a spiritually-orientated person. The thing I desire the most is to be One with The Infinite. Because nothing else beats that feeling, no high or thrill of any kind. The Love of the Infinite is the most powerful force in the Universe, and if you know that Love, you cannot but help love Its creations, human beings. Or perhaps it’s more accurate to say, you cannot help but feel compassion, because humans in general are in a mess. Wars, oppression, poverty, violence and difficulties of all kinds, from large to small - we all know what a sorry state the world is in. And most of the pain is caused by humans themselves, on themselves or other humans. You have to either loathe them or feel sorry for them, and I prefer the latter. Because to allow bitterness, prejudice and intolerance into my heart, takes me away from God, and I’m not going to allow that to happen.

I admit, in my earlier years I often felt that bitterness, and even sometimes edged close to that intolerance and prejudice, because of the pain that is the inevitable result of living with undiagnosed, unknown-even-to-me Aspergers. Those on the spectrum, especially those over thirty, will know the struggle of which I speak. But though I often floundered in confusion and angst, I couldn’t ever sustain negativity, not completely, and never for long, it simply isn’t in my nature. In the end, burnt-out and worn-out from trying to be ‘normal’, I knew I had to take a different approach to life – or die. It was that stark. I couldn’t go on any longer the way I had, I was beyond even ‘running on empty’, I was bone-dry, not a drop left in the tank. It was at that point I sought out a spiritual centre and learnt meditation, consciously stepping onto the spiritual path, which I’ve been on ever since (admittedly with a good deal of meandering!). Over a decade of meditation, prayer and ‘living with God’ has not only given me tools to cope with the world, it’s helped me to understand this crazy old world better – and to feel compassion for it. I see the pain, I see the troubles, and my heart can’t help but be moved. It’s who I am, what I am.

So I feel this compassion, and naturally I want to help. Well, I’m still an aspie, and I can’t cushion things much – I speak the truth, about how I see things. But here’s the thing – I want that truth to be a way by which people are helped. As a writer, words are my stock-in-trade, and I do my damndest to use them wisely; to help people see their own Truths, to clarify their lives, understand themselves and others better, simplify complicated situations, and generally make the world a better place. (Because who the heck wants it to be a worse one?) I see this as a responsibility that comes with having a gift for using words. So though I may at times seem forthright, even blunt, it’s not with the intent to hurt, but rather with the object of ‘cutting through the thicket’, unravelling the complicated, and laying bare the heart of the problem. Sometimes, yes, this is painful. But only when the problem is clear, can people actually do something
about it. If I can’t find the right words to help someone to see their way, or if I feel unclear in myself about what’s happening, then I try to refrain from saying anything (or at least until something does become clear). I remind myself that no-one but God can know everything. (And in case you were wondering, yes, I also do this ‘cutting through the thicket’ on myself. How else do you think I learnt it?)

It may seem arrogant to some, this belief that I can help others simply through my words. Let me be clear on this - I have no illusions (a kind of wistful hope, maybe, but no illusions), that I can, simply by my words, ‘wave a magic wand’, and utterly transform people’s lives for the better. Sometimes my words are rejected, resented, or ignored. Fine, no-one has to listen to me, and I’m not the fount of all wisdom. (If I was, I’d have handled my own life better!) But I do have certain understandings, mostly gained the hard way, and if I feel I can help, I will say something. And more than that, I seek to be a channel for a Greater Wisdom – something that doesn’t come from me so much as through me. And sometimes you can sort of ‘plant seeds’ in people’s minds, which might grow and flower in time. Or just enable them to look at things a different way, empower them to make their own changes. Others have done this for me in the past, I’m simply passing the favour on.

So my philosophy can be summed up basically as – to do good whenever I can, or at least to do no harm. I figure there’s enough negative energy and aggro in the world already, and I don’t want to add to it. I want to help people when I can, and if not, then refrain from making things worse. Sounds simple, perhaps even ‘woolly-wafty-liberal’, but it’s actually pretty radical, and not always easy in practise. I admit, I have my bad times. Times when I feel down and rejecting of the world for a while; or times I curse out a driver who cuts me off in traffic and give Jesus Christ a new middle name (though this is mainly fear, because my driving reactions are not that fast, and drivers who drive recklessly or carelessly scare the crap out of me); and other times I get stressed and snap at someone, or I say the wrong thing – even when it feels right - and hurt someone’s feelings. And still other times I know there’s probably something I could say, but I’m too emotionally scattered or stressed to find the words, or the energy to say them. There are people I fail. I’m human, I have shortcomings and make mistakes and blunders like anyone else. And I’m also aspie, with all that that entails.

But the main thing is that I try. I have this approach to life, this outlook, because it’s the only way I can live with myself, the only way I can stay close to The Infinite, the only way I can be a spiritual being and a person with Aspergers, and not succumb to pain, bitterness, and the downward spiral. It’s the only way I can live. Literally.

Hope, Harvey Milk and aspies

 Recently I was watching a DVD of the film ‘Milk’, about Harvey Milk, the first openly gay elected public official in the USA. It’s a great movie, and I’d recommend it to anyone. But what particularly struck me, near the end, were the words that Harvey had recorded on tape, to be played ‘in the event of my assassination’. (Which of course, is precisely what happened.) Anyway, this is what he had to say –
“I ask for the movement to continue, because it’s not about personal gain, it’s not about ego, it’s not about power. It’s about the ‘us’s’ out there. Not just the gays but the blacks and the Asians, the seniors and the disabled. The ‘us’s’. Without hope, the ‘us’s’ give up. And I know you can’t live on hope alone. But without hope, life is not worth living. So you, and you, and you, you got to give them hope. You got to give them hope.”

You got to give them hope. Back then, young (and not so young) gays – and lesbians, and blacks, and all the minority groups - were killing themselves, because they had no hope. Sometimes, they still do. But there’s another group who, unknown to many, have also had a high suicide rate. I mean those on the autistic spectrum. I’ve felt desperate enough myself at times – if I didn’t, it was because of some basic inhibition against it in my nature, rather than because my life suddenly looked like it was going to change for the better.

But it’s not just about suicides, I realized. It’s about what kind of world we want to live in, what kind of values we live by, what kind of people we want to be. Do we want a world in which every person’s human rights are respected? Do we believe every human being is equal, worthy of respect, worthy of being treated like a human being, regardless of what race, ethnicity, religion, gender, sexual orientation, physical disability, mental illness, developmental disorder or neurological difference they have?

Or do we want a world of division, of hatred, of prejudice, of judging and separation, of ‘apartheids’ of all kinds? Do we want a world where people are treated as ‘lesser than’ and abused by individuals or ‘the system’, simply because they are ‘not like thee and me’? Because something about them – whatever it is - is different? Those who have studied history have only to look to Nazi Germany or South Africa, to know where that ultimately leads.

It’s not necessary to join any political or social movements to be a decent person. You simply have to recognise the basic equality of all human beings. Ultimately, in my eyes, this is a spiritual principle, as all humans are beloved equally by The Divine Power, but you don’t have to be a conscious believer in God either to do it. You simply have to choose – do you go for divisions between people, and all the hatred, prejudice and oppressions that follow on from that, or do you go for inclusion and reaching out to those ‘others’?

What kind of person do you want to be? What kind of world do you want to live in? That’s the real question. It’s your choice.