Privilege, Prejudice and My Life

Since I was a child, I’ve been keenly aware of injustice and inequalities. While I’m sure that a big reason for that is being autistic, I think another part is that I’m different from ‘The Normal Human’ of the Western world - the white, middle-class, cishetero, able-bodied, neurotypical male, against which everyone else is seen as lacking or inferior or just unworthy even of notice. I just don’t fit into that ‘normal’ in so many ways, and I’ve always known it, even before I could label it. The list of ‘othering’ factors I experience is long.

Some would assume woman is on that list, but although I was born with a female body, and certainly have experienced sexism, I’ve never identified as a girl or woman or even female. It just wasn’t me, but it took me a long time to define that I’m not actually either gender in my inner self/identity. There are different labels for this, but I feel non-binary best describes me. But of course it marks me out as different from Normal Man too, in a different and even more marginalising way.

Despite this, or maybe even because of it, I am definitely a feminist. Even as a child, I remember protesting the privileges that the males in my family had, though everyone looked at me like I had lost my mind. When I eventually discovered feminism, it felt tailor-made for me. I threw myself into trying to be a ‘right-on’ feminist, to fit in to the required appearance, behaviour, image. It was a long while before I realised so much of it was just another set of expectations to trap me in. Now, though I still agree with the central tenets of feminism, I have found my own way to be ‘liberated’.

Along with feminism I discovered, or rather re-discovered, my sexuality. I called myself lesbian for years, but truthfully, I’ve never liked the word. These days I call myself gay, it doesn’t feel totally right either, but I’ve yet to find a better one. But whatever I call myself, I never felt accepted by the lesbian community any more than I had been anywhere else. I just didn’t, and don’t, fit the mold here either. Being ignored, snubbed, overlooked, excluded etc, got tiresome. So eventually I quietly dropped out of the lesbian community. I doubt I was missed.

Through feminism and attending university, I also came to a consciousness of class. By associating with middle-class people, I realised that I’m not. If you think I should have realised that before, you’re probably right. But it truthfully never occurred to me. I thought class was something that only happened in the UK, us New Zealanders tend to believe ‘we’re all equal’. I soon learnt otherwise, and for a long time I blamed the struggles I was having on classism.

Meanwhile of course I developed physical disabilities. The first of course was CFS, or ME as some call it. I’ve had this for forty years now, and it’s been devastating in its effect on my life. More recently, I’ve developed arthritis, diabetes, low thyroid, a crapped-out ankle, acid reflux and probable IBS. Other problems come and go. There are so many things I can’t do, can’t participate in, together they all thrust me to the margins of the able-bodied world.

And while I was acquiring these physical disabilities, I realised that I’m autistic too. And that I have sensory processing disorder, executive dysfunction, alexithymia and auditory processing disorder with it. The list of ‘conditions’ I have just grew and grew, and the sense of being a ‘marginal person’ just grew and grew with it…

There are of course a few areas in which I could be said to be privileged or ‘Normal’ of course. I grew up in and live in a Western country. I got to university, even if it wasn’t till I was 26 and a ruined health meant I never completed it and likely never will.

Religion? Well I suppose I was nominally Christian in my younger years, but religious differences between my parents meant that it wasn’t exactly pushed on us, and I grew out of it eventually. Since then I’ve gone through the women’s spirituality movement, the New Age movement, a semi-demi-cult and now… nothing. Agnostic probably describes me the best, if I must use a word. Perhaps it’s a privilege in itself, to be able to openly describe myself this way, and reject religion, a prerogative that many in other countries don’t have.

But here’s a funny thing – the one area in which I don’t experience oppression or being ‘different’/in the minority is the one that has often concerned me the most, and which I have probably done the most activism in. And by this I mean race.

I’ve had an awareness of racism since I was a child, possibly even before I was aware of sexism. It’s important to note that I was a post-war child, yes (I sigh), a boomer. But what this meant was that World War Two and the Holocaust were recent collective memory. I didn’t actually meet any Jewish people till later, but I remember becoming aware of how if someone was mean or tight-fisted, people would say ‘don’t be Jewish!’ I made a conscious decision not to use that term ever again. Yes, as a child. Call me precocious.

At some point after that, when us kids were playing ‘Cowboys and Indians’, I found myself wondering why the Indians were always The Bad Guys. I can’t remember if I tried to change the rules or suggested a different game, or maybe we just grew out of it, but at some point we did stop playing it. I don’t know if any of the younger generation still do.

It must have been somewhere in my teens that I first heard of South Africa’s apartheid regime, and was instantly opposed to it. I just knew in my bones it was wrong, and the more I learnt, the more that feeling was confirmed. About ten years later came the Springbok Tour of 1981, which of course was seen by many as the NZ Rugby Union supporting the apartheid regime. Like many Kiwis, to me rugby is The Game, but that made the shock of the Tour only worse. I could not believe that anyone would invite those oppressors to my country, and willingly joined the protests against it.

It was during these protests I became aware of racism here, thanks to Māori activists. That’s not to say it had totally escaped my awareness, but it hadn’t been thrust in my face before that. Along with many other white people, I joined the anti-racism movement, spending more time and energy in it than feminist activities. This lasted several years until health issues meant I dropped out of all political activism. But I’ve continued to see my own racism as something to work on, root out of my subconscious, and I do my best to challenge other white people’s racism too, when I can. It’s an ongoing thing.

I’m conscious of my racial privilege. I know that I can walk around a department store without having staff follow me in the assumption that I’m going to shoplift. I can walk down a street in Remuera (Auckland’s swankiest suburb) and not have people assume that I’m there either to clean a house or rob it. And that’s just the surface stuff – my culture, language or ancestral lands are not under threat of being wiped out, destroyed, suppressed or stolen. I’m not likely to be harassed or beaten up by cops or ‘profiled’ on account of my race. And so on.

The thing that puzzles me though is why for so much of my life, I have so often been more concerned with racial issues than the areas in which I am one of the underdogs? Is it because I have so little privilege in other areas I am more aware of the things I don’t have to experience?

I’m really not sure.

Anyhow, I just wonder if anyone else has a similar story to tell. What are YOUR privileges? What are the issues that have concerned you the most, through the course of your life? Are they the ones you suffer from, or the very ones you don’t? We autistics usually have a keen sense of justice, but where has your focus been?

Things I Don't Understand - Normal

I don’t understand ‘normal’.

I’m thinking of two types of ‘normal’ here, though they blur at the edges.

The first is who or what is largely still assumed to be the social norm, the ‘standard’ for others to live up to, emulate, or to be measured against. And that norm is the white, Western, middle-to-upper class, cis-heterosexual, able bodied, neurologically typical male or, as one commentator calls it, ‘Default Man’.

And yet is this really the ‘average’ person? Just looking at statistics says no. Most of the world’s population is non-white, for starters. Even if you only look at, say, Europe, in most of its countries, more than half the people are female. Even looking at just the men, setting aside those who are gay/bi/trans/gender neutral/etc, those who are not white, not middle or upper class, those who are not of the majority religions, and those who are not able-bodied and neurotypical… I’m betting that what’s left is actually only a very small proportion. (Ten percent, according to the writer of ‘Default Man’.)

So how did this minority become held up as the ‘standard’? The answer to that lies with history. Men have been dominant for millennia. Add in all those colonisers, slave-owners and plunderers of non-European countries who didn’t think non-whites were even truly human, centuries of religious and social condemnation of non-cis-heterosexuals, a power imbalance in favour of the rich, screwed-up attitudes to the disabled coupled with lack of understanding of science… And you have the perfect storm for a narrow slice of the population to be able to hold themselves up as the benchmark group for everyone else to envy, compare themselves to, and wish to belong to – or to made to feel as though they should wish to.

We can’t change history of course. But some of these attitudes are still with us. Witness the bias towards male experience in the diagnosis of autistics, for example, that sees many females not diagnosed because they don’t fit the stereotype. Or how black kids are not allowed to wear their hair in ‘black’ styles in some schools. Or how people react to Muslim women’s head-coverings. Then there’s the pressure to not be ‘obviously’ gay, or to speak ‘standard’ English, or for immigrants to speak English instead of their own language even amongst themselves, or the recent attempt of a certain Australian politician to have a motion passed that it’s ‘okay to be white’ (apparently, if it wasn’t passed, whites would be the ‘victims’ of ‘genocide’, yes, you can roll your eyes now).… You can probably think of more examples, but you get the picture.

So I understand the historical reasons for the current situation, what I don’t understand is this clinging to the old standard, when it’s so obviously not actually ‘standard’, or even ‘average’. I can only assume it’s fear – fear of ‘the other’, fear of change, fear of somehow losing white privilege (which too many of them view as their ‘rights’). They’ve been thinking of themselves as the ‘norm’ for so long, they’ve come to feel they really are it. Or the best thing to be, or however they justify it to themselves. And you can almost watch the scrambles going on in their minds, as they try to do so. The mental blocks and torturous reasonings they have to manoeuvre around, the gaping holes in their arguments and world views that they refuse to look at.

I can tell you that as a person of European ancestry, I don’t feel fearful of ‘white genocide’ any time soon. I am more concerned with the actual genocides and wars and oppressions already going on, the plight of autistics everywhere, of gays in some countries, of immigrants fleeing terrible situations, the effects of climate change, etc, etc, etc. Not to mention all my own day to day difficulties of course. You know, real problems.

So I don’t understand this insistence on a group who never have been the majority, being able to keep their power, their wealth, their privilege, at the expense of those who actually are the majority. I guess what I’m saying is, I don’t understand reactionary people.

The second ‘normal’ I don’t understand, is a category of people I don’t even have a name for. They’re the ones who simply …do things. Like, they get out of bed in the morning, go off to work or school or wherever, come home, eat, relax, and then go to bed and fall asleep. Straight away. And then wake up and do the same over again the next day. Without thinking twice about any of it.

And on their weekends or days off, again, they simply get up and do things like mow lawns, catch up on housework or schoolwork, tinker with their hobbies or take themselves and their loved ones out to places like movies, shows, amusement parks, the beach, and so on. During their holiday breaks, they crowd to places where lots of others go, and don’t seem to mind that at all, or even like it.

And if you ask them, how do you just do these things, they look at you like you’re crazy, or simply say ‘I never thought about it.’ And shrug. And go on doing it.

I get that people do this, I just don’t understand how.

How they do it without stress. Or at least not the kind of overwhelming stress that us ‘not-normal’ people suffer. They never worry about things like sensory challenges, social challenges, transition challenges, executive functioning issues, mental/emotional states and triggers, stairs, wheelchair access, exhaustion, blood sugar levels, allergic reactions, pain issues, will-there-be-food-I-can-eat issues, whether-X-activity-will-make-me-dizzy issues, and all the thousand-and-one other things that those of us with ‘conditions’ stress about. Not to mention those of us who have the anxiety of possible exclusion or even threats to personal safety because of race, class, sexuality, gender identity, religion or lack thereof, etc.

These ‘normal’ people just …do things. Without a second thought. No agonising, no scattered thoughts, no intense pre-planning, no I-did-this-yesterday-so-I-have-no-spoons-to-do-anything-today, no double and triple-checking everything, no fretting over whether you’ll get a park close enough or will the accessible parking be all taken or will some dipstick give us hassles because we have an invisible disability and park in a disability space, no worrying about potential meltdowns or shutdowns, no ‘at what point does it get too much and we bail out’, no ANYTHING.

I used to read accounts of these people’s lives, only half-consciously looking for any sign of this, but it just wasn’t there. And then it finally hit me - that they don’t worry about these things because they don’t have to. So I understand that now. But I’ve been struggling with so much for so long, that I have no conception, no understanding at all, of what a life without that struggle would feel like.

But what I do understand, is that, if all of us ‘not-normal’ folks got together, we may find that, like the non-‘Default Man’ people, we’re actually the majority – and that it’s actually normal to be ‘not-normal’.

I'm Tired Of Normal

I’m tired of normal.

I’m tired of ‘normal’ being held up as the Gold Standard for autistics to achieve, as though our lives have no worth unless we do.

I’m tired of people implying that normal is ‘better’ or even ‘perfect’, when even a cursory look at NTs reveals that they are far from perfect.

I’m tired of people claiming that our lives would be better, or easier, if we were ‘normal’, or could at least present a façade of it, when what they really mean is that THEIR lives would be easier.

I’m tired of the idea that if we’re not normal, we’re a ‘burden’ on our parents, a ‘drain’ on society, an epidemic or disease, brain-damaged, or just someone to pity.

I’m tired of the idea that there are all these things that must be ‘fixed’ in us.

I’m tired of the insistence on a degree of ‘normal’ for autistics that is not demanded of others, with NTs allowed all sorts of quirks, variations, and ‘hobbies’, but our ways get defined as Bad Things.

I’m tired of the insistence of so many, that we must be repressed the hell into absolute conformity to this mythical ‘normality’, that this is somehow ‘better for us’. No matter what the personal cost.

I’m tired of autistic children being subjected to ‘treatments’ and ‘therapies’ that are either fruitless, ridiculous, demeaning, abusive or even outright dangerous, in order to ‘cure’ them of being ‘not normal’.

                                  

I’m tired of autistics being bashed over the head with normal, of us feeling that we have to punish ourselves any time we’re not ‘normal’, or others doing it for us, instead of supporting us to accept our differences, and embrace both our strengths and our limitations.

I’m tired of autistics being crucified to fit into normal.

I’m tired of being ruled by this Tyrant called Normal.

I’m so, so tired of normal.

Let’s get rid of Normal.

Let’s throw off the shackles of this tyrant.

Let’s stand up for our right to be our true, authentic autistic selves, in all our wonderful, eccentric glory.

Let’s insist on an end to coercive, useless, cruel and demeaning ‘treatments’ and ‘therapies’ that try to normalise us.

Let’s demand that The Powers That Be actually LISTEN to authentic autistic voices, and incorporate our viewpoints in EVERYTHING to do with us. NOTHING ABOUT US WITHOUT US.

Let’s demand an end to all biased research, which pathologises our natural reactions and ways of being.

Let’s demand of the media that they stop with the inspiration porn and the pity party news items, already.

Let’s promote autistic pride, for all autistics, of whatever age or whatever ‘functioning’ level, and while we’re at it, let’s insist on the scrapping of the whole concept of ‘functioning levels’.

Let’s insist on the use of only those programs and approaches to autism that actually HELP us, not just try to force us into the ‘normal’ straitjacket.

Let’s insist on being our own ‘normal’, as WE define it.

Let’s do whatever we need to do, whenever and wherever we need to do it, in order to end the tyranny of normal.

Let’s do it, because we deserve it.