All The Things We Are Supposed To Be And Not Be

Has anyone ever felt or noticed that there are so many things we are supposed to be? So many things, which, for most of my life, I have felt *I* am supposed to be, or to conceal if I’m not.

For instance, we’re supposed to be perfectly neurotypical, to not be autistic or ADHD or dyslexic or any other neurospicy flavour. Or if we are, we’re not supposed to be a ‘burden’ or let it ‘impinge’ on others, we’re expected to put up a perfect pretense of ‘normal’, no matter what it costs us. And if we can’t, then we should Just Go Away. Disappear.

We’re supposed to be completely able-bodied, no illnesses or disabilities, whether physical, neurological, learning/intellectual, metabolic, acquired or innate. Or, if we aren’t, it’s often seen as ‘our fault’, and again we’re supposed to pretend we’re not, even if it hurts and exhausts us, and to ‘not use it as an excuse’. And if we can’t, then we’re supposed to keep out of public view, so as not to ‘force’ the sight of us on ‘normal’ people. Oh, and you mustn’t have any mental health issues either, or keep them/yourself out of sight. Heaven forbid you have a breakdown in public.

We’re supposed to be completely cis and hetero, because gay, trans, non-binary etc are weird/abnormal/disgusting/It Would Just Be So Much Easier If We Weren’t. If we’re gay/lesbian, then we ‘shouldn’t push it into everyone’s faces’ (i.e. stay in the closet). If we’re trans, then we’re ‘mutilating’ ourselves, and should ‘just accept’ the body we were born into, even if it jars every last nerve we have. If we’re bi we’re ‘confused’, if we’re gender-fluid, same, or lying. Intersex people? Either ignored or denied. And if we’re asexual or aromantic, then OMG what’s WRONG with you??!!

And it doesn’t end there.

We’re supposed to be, if not well-off, then at least financial enough to not need any help from ‘the system’. Being poor is somehow offensive, and being dependent on welfare is especially a Crime Against Society. It’s considered a personal lack if we need anything of anyone else, in any way. (But if we’re female, paradoxically we must always be ready to assist others.)

We’re supposed to be able to eat anything, anywhere, anytime it’s offered or available. Allergies, food intolerances, sensory difficulties, even simply strong dislikes, are all ‘nuisances’ or ‘stupid’ or ‘made-up for attention’, or just plain ‘fussiness’. Similarly with clothes – sensory problems or dislike of certain fabrics or styles are ‘silly’, or even ‘dangerous’, especially if you’re non-binary or trans.

And of course we can take it as a given that non-white people, both native and/or descendants of slaves, have been routinely made to feel ‘other’, inferior, and unwanted. (Non-white) immigrants are told they ‘should go back where they came from’, no matter no matter what awaits them there. That the rest of the world (ie white people, even in countries whose population is largely descended from immigrants) shouldn’t have to tolerate them. That they should not exist.

Perhaps the most‘shoulds’ and ‘oughtas’ are reserved for those born into female bodies, regardless of what else we are. The list is long, and has been covered elsewhere, most notably the soliloquy from the Barbie movie. And these things are often contradictory, so that women can never win. We must be assertive, and honest, but never ‘threaten’ or ‘undermine’ men. We must be gentle, but not so much we become victims.

We must be perfectly groomed at all times, never too over- or under-weight, fit and healthy. Our cooking must be perfect, and as much home-cooked as possible. Our children of course must always be perfectly clean and tidy, and, naturally, well-behaved and without any ‘issues’.

Our homes must always be tidy and clean, preferably looking like a show home at all times, and a carbon copy of others as much as possible, even if that doesn’t work for us. Heaven forbid we have belongings scattered around, or if our daily routines just aren’t like other people’s, or that we arrange our homes to suit ourselves. It’s ‘selfish’ or ‘weird’ and grounds for some pretty severe criticism, especially online.

Yes, in many places things have improved. Somewhat. Laws have changed, there are pockets here and there of people very welcoming of difference, and others who at least pretend to be… well. Nice. Polite. Accepting. And yet… There are assumptions, misconceptions and microaggressions. Pauses, smiles that don’t reach their eyes, turned heads and cleared throats and outright snubs. What with that and images in the media, TV and movies, we can still end up feeling like we’re burdens, that we must conceal our true selves/bodies/sexuality/race/religion/whatever, in order to be acceptable to others, to not place a burden on them, to be seen as ‘okay’ or ‘normal’. And this is in comparatively ‘safe’ countries. (Because some countries are decidedly unsafe for many.)

Why? Why should we have to hide or erase our differences in order to be even grudgingly accepted? Why is there still this dislike of those who are ‘different’? How on earth do we tackle it, both collectively and individually? It damages us. It erodes our self-confidence, makes us hate ourselves and feel ashamed and inadequate, and causes us to self-erase. All in a desperate need to become part of a world that doesn’t truly accept us as we are – or to avoid its outright attacks.

But is it really so awful that so many of us are not ‘Default Man’? (ie white, middle-class, cishetero, able-bodied, neurotypical, etc, etc.) Are our needs really ‘too many’, ‘too costly’, ‘too much of a burden on society’, blah blah blah? Are all these demands - usually unspoken but not always – legitimate? I don’t think so. I think we have the right to simply be what we are, whatever that is. Default Man is a highly privileged minority anyway.

I must admit, I find it hard to eradicate these buried attitudes in myself. While I have consciously rejected them, there are still fragments of them deep down that sometimes erupt to the surface in unexpected ways. But becoming aware of how they affect me is a start. You can’t tackle what you don’t know is there, constantly undermining your attempts at self-actualisation.

I do feel strongly however that somehow the attitude that This or That is Normal and hence
Desirable/Better/Superior must be seriously challenged, at its very root.

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?

On Wanting To Be Normal

Recently I wrote a post on all the ways in which I’m different from the mainstream. It’s made me more aware than ever of the whole concept of ‘normal’.

I know that there are many, too many, autistics out there who don’t want to be autistic. Who just want to fit in and be ‘normal’. I don’t agree with their stance, but I can understand why.

If you’re a young person who’s spent their whole life having it drummed into you that autism is a wrongness that needs to be Fixed, Treated, Managed and Social-Skills-Classed the heck out of you, if you’ve drowned in ‘behaviour plans’, IEPs and ‘special needs’, then of course you would wish you weren’t autistic. There are young adult autistics who refuse to identify as such, or even talk about it or be in contact with other autistics, because they’re so sick of all of that.

And if you’re an older autistic who’s spent a lifetime being put down, criticised, reviled, rejected, side-lined and/or abused for simply being what you are, struggling with co-occurring conditions like Executive Dysfunction or Sensory Processing Disorder, whether you have a diagnosis or not; if you’re unemployed, friendless, maybe homeless, struggling with depression, anxiety and other mental issues or addictions, then you’re not going to see much value in being autistic, and will likely reject the autistic community, think it laughable even.

I also know there are even autistics, both young and old, who support ‘that’ kind of autism organisation and their research into eradicating autism. I feel for them, I truly do, and I understand why they would do this, even if I don’t think it’s a good path to take.

The biggest reason not to take this path is simply this – it can’t be done. It’s gene-deep, brain-deep, neurologically-deep. It’s in your very nerves, muscles and cells. You can’t eradicate it. The only way to ‘rid society of autism’ is for all autistics to die and no more to be born, ie you can only eradicate autistics, not autism. Which amounts to genocide. And even if you don’t think this is a step too far, and/or you’re thinking well at least this would mean nobody would suffer like you have, consider that there are autistics who don’t feel this, who want to be alive no matter how difficult it is, and/or whose parents, family and friends, especially other autistics, very much want them to be alive. And you don’t have the right to decide for them. And that the biggest problem in all the above is actually people’s ATTITUDES to autistics. If that changed…

So my feeling is that we might as well accept it, even embrace it, and maybe even try to make the world a little better for all of us not ‘normal’, or at the very least give a giant metaphorical raised finger to the world, with our being proud to simply be ourselves. Because why the heck not.

In light of all this, I look at my own life, and while it’s been difficult beyond words, and there were long spells when I did try hard to be ‘normal’, I didn’t ever really see that ‘normal’ as anything wonderful. The paradox is that the very traits that make me different from NTs are the very traits that led me to think what the heck is so superior about these people? And this was long, long before I had any idea that I was autistic. This is the other thing at the heart of rejecting wanting not to be autistic – why would I want to be something I didn’t regard as an ‘improved model’, even if they obviously did? So no, I don’t want to be NT.

What about the other characteristics that make me ‘different’? Being gay, for instance? I’m gay/lesbian because I don’t find men attractive. So why would I want to be someone who did? And non-binary – same. If I don’t identify with either binary, male or female, why would I want to be someone who did? Then there’s being an aromantic - if I don’t find romance exactly thrilling, why would I want to? Same with being introverted, why would I want to be one of those noisy extroverts who plague me? You get the picture, I’m sure. It’s all the same paradox, knowing that the alternative is more acceptable to society, but I simply can’t find it an attractive enough state to want to be it.

So in what ways do I wish I was ‘normal’? I think the biggest thing I’d rid myself of, if I could, is my physical disabilities. I’d love not to have CFS, or arthritis, or even an ankle that hasn’t been screwed up ever since I broke it. I’d love to have normal energy levels. To get up in the morning and go about my day, without needing hours to rev myself up to regular speed, because if I rush, I’ll get dizzy, nauseous, sweaty and probably end up back into bed. And that’s on a good day. Bad ones, I likely never get up at all, except to take the pills that help prop me up, eat the foods I need for same, or to go to the bathroom. Bad nights, I barely sleep at all. And the next day or even days, just plain suck.

It would be very nice to get at least somewhat closer to normal than this. But I know it’s not going to happen, that there’s not likely to be a cure for CFS in my lifetime. And also knowing that ageing and lack of fitness have taken away a great deal anyway. Having CFS sucks, but so does getting old.

Another way I’d like to be ‘normal’ is to not be poor. But that’s linked to being physically disabled for so long, and to some extent to who and what I am. I was never good at jobs, and was forced to drop out of university because of CFS – an illness caused at least in part by the stress of attending uni without the supports I had no idea I needed. There are, I suspect, many autistics with CFS or some other stress-related illness or disability, not surprising given the amount of daily trauma we suffer. I’ve made a lot of mistakes in my life, but I think the biggest was forcing – pushing - myself to attempt ‘normality’, that it has harmed me on a very deep level.

In summary then, there’s not many ways I’d want to be ‘normal’, and they are based on things I don’t feel are intrinsic to me, unlike being autistic, gay, introvert, etc. If I could change my financial or physical status, I definitely would. But as things stand, I can’t. So I’m kinda stuck with them.

Being autistic though? I wouldn’t change it for the world. Even when it makes my life very, very hard indeed. I am what I am, and I refuse to apologise for it. And nor should anyone else.