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.

Who I Stand With and Why

We’ve all been watching the news from the USA, many of us with mounting horror and dread. It’s just one horrible thing after another. The worst kind of people gaining power and control. The wholesale wrecking of government departments and sacking of even essential staff. The demolishing of legal rights and protections for and attacks on the most vulnerable, the erosion of human rights, the muzzling of the press… And on and on it goes. It’s scary stuff, especially for those into history. There’s an onslaught of enmity directed at anyone who doesn’t fit into the cis, straight, white, male, middle- or upper-class, born-in-the-USA conservative Christian mould - even conservative Christian women now, which is surprising no-one but those women themselves.

The most important question is not ‘what will THEY do next’, because we can all guess, even if only by looking at history. (Concentration camps, anyone?) The Big Question is, how much and for long will the American people put up with it, before they rise up in rebellion? When (not if, but when) that will happen, what form it will take, how successful it will be, what the end result will be, is anyone’s guess. The only sure thing is that it can’t go on like this.

The new ‘rulers’ are of course presuming on shock and awe to keep everyone under their thumb. But I think they underestimate people. Even Americans, who, let’s face it, have had their education system run down, their rights steadily eroded, their economy tanked - FOR DECADES - and who have been indoctrinated into believing that ‘Murrka is the Greatest Country on Earth’, are not going to take it forever. Or even for that much longer. And of course the targeted groups are probably going to play a pivotal role in leading the resistance, because they have to. Because it’s THEIR lives at stake.

To be sure, many of those in the most vulnerable categories are feeling terrified and helpless. Some are leaving or planning to leave the worst states or even the country. (And let’s be clear, you’re not a coward if you can and do flee. Some are more vulnerable than others, or lack the capacity to fight.) Others are trying to help them get to ‘sanctuary’ states, though how long they will be able to keep gays, trans people, immigrants, women who want abortions etc, safe, is yet another good question. People are right to be scared. But sooner or later, if you’re pushed to the wall, you have to push back, if only because you’re not able to either flee or hide. I think it’s already begun to happen. And let me note here that street demonstrations and court decisions are only the beginning, not the end, of the resistance. I mean, I’d be relieved if they were effective, but I’m not holding my breath. Because Trumpet and his cronies have nothing but contempt for courts, laws, government departments and even their own voters.

I want to make it plain that at least part of my support for these groups is because I identify with those in danger. I’m acutely aware that if I was a US citizen or resident right now, I’d be in danger too. I’m gay, non-binary, autistic and almost certainly ADHD as well, I have multiple physical disabilities and health conditions, including CFS, arthritis, thyroid issues, high cholesterol and diabetes. I am on (government paid-for) medication for the last three of those. I’ve also been poor all my adult life, am dependent on NZ superannuation (i.e. the old age pension), and live in social housing. I’d be a target, for sure, so I really, REALLY feel for all my counterparts in the States.

But it’s more than that. It’s a matter of simple human decency. How anyone thinks it’s okay to attack people who love their own gender, identify as a gender that doesn’t match the body they were born with, are of a different race or religion (or none), fled persecution or poverty in another country to find a better life for themselves and their family, etc, etc, is beyond me. I simply don’t understand this level of cruelty. If I had been alive in 1930s Germany, you can bet I would have been opposing the Nazis, and I’m opposing them now. You’re either on the side of human decency, compassion and justice, or you’re not. End of.

Because of this, I’m not going to waste time pleading for Those In Power to spare my American counterparts. Things have gone way beyond that. I’m not able to do a lot from this distance, but I will certainly do what I can, most especially not allowing myself to be silenced. I don’t know if Big Brother is reading this. Maybe, maybe not. Either way, Big Brother? Go fornicate with Yourself.

Some would say, ‘oh, it’s easy for you to say all this, you don’t live in the States, you’re safe’. But we’re all fooling ourselves if we think the Orange One’s influence stops at the shores of the US. He has already made territorial threats against Canada, Greenland and Panama. He’s blatantly sided with Russia, and publicly attacked Ukraine’s courageous leader to his face. He’s demanded insane things of other countries, or sent his VP to verbally attack them. And that’s all just in less than two months. Not to mention that NONE OF US ARE TOTALLY SAFE if he triggers World War Three. A second American Civil War would affect people way beyond America’s shores. Tariffs or the collapse of American share markets, businesses or banks can also affect the whole world. So no, I don’t think we are going to be totally safe wherever we are.

Not that I’m deluding myself that they’ll come after me personally, I’m not important enough. Nor am I planning (or able, or even wanting) to visit the US any time soon, and New Zealand is not considered an ‘enemy’ of the US, right? ...Right? And Trumpet has really respected America’s traditional allies …right? But he wouldn’t interfere with another country’s citizens… right? Right?

 Truthfully though, I’m more concerned right now about the encouragement he gives to the worst kinds of people everywhere. A member of the coalition government here has proposed a bill to get rid of all DEI laws and regulations. It has little chance of success… so far. Who can say what the future holds.

 But ultimately it doesn’t matter. On the deepest level, I simply do not care. So Big Brother, if you do wanna come after me, all I can say is - bring it. I know who my people are, and who I stand with. And it’s not those currently calling the shots across the other side of the Pacific.

On Being Both Autie and Addie

As those of you who follow me on the Book of Faces know, for some time now I have become more and more certain that I am not only autistic, but ADHD as well. It’s true that some things like sensory overload and the ability to hyperfocus can be common to both conditions, as is my quite atrocious Executive Dysfunction. But that doesn’t explain things a lot of other things I’ve noticed about myself.

 I used to think it wasn’t possible to be both, and a test or two I did initially suggested that I wasn’t. But then I found better tests, and some uncannily accurate videos, and began to think and explore more. And now? I’m fairly certain, and becoming more so the more I explore. I call it being both ‘Autie’ and ‘Addie’.

Among the things I’ve noticed so far – and there will probably be more, as this journey is really only just starting –

- my erratic attention span and high distractibility, leading to ‘daydreaming’

- my frequent restlessness, both physical and mental

- quick frustration or boredom, with people, conversations, tasks and even jobs

- my need for stimulation and variety interspersed with periods of rest

- difficulty following verbal instructions

- chronic disorganisation, with major panic if (when!) I lose something important

- difficulty with time-keeping/awareness

- impulsiveness, ‘snap’ (and often disastrous) decision-making

- frequent job-hopping in my younger years and changing my major at university several times…

you get the picture.

And yes, I have the classic DOOM piles (or boxes, or bags, or overflowing drawers or cupboards…) even though my flat is way too small to accommodate much clutter. Like the two big boxes of stuff that need to go into my underbed storage which have been clogging up my tiny living area for WAY too long… Or the mountains of clean laundry that sometimes go unfolded and put away for days… Or the books piled up ON TOP of the bookshelves because I keep acquiring more but have nowhere to put them... And I’m not even going to talk about the dishes. Let’s just say they’re not my strong point.

So, yeah. Quite a bit of Addie stuff going on here.

In my earlier years, before I even knew I was Autie let alone Addie, life was …pretty chaotic. Not just in terms of actual mess or disorganisation - and there was plenty of that! - but in terms of the emotional cost. Depression, self-hatred, shame and self-blame, constantly telling myself how worthless, useless and stupid I was, over and over. With tears running down my face, I would be convinced I was a waste of space and should just do away with myself. I managed to overcome some of this when I discovered my autism and the autistic community, but there’s always been another layer, and now I know what it is.

So how does being both work in practise? (And bear in mind, this understanding is still a work in progress, as more light gets shone on my life.)

Sometimes, they help each other out. For instance, if I have something important to go to the next day, my Autie self will see me prepare everything I need the previous night. Or if I’m going on holiday, the Autie self will start making a list days prior, and ironing, folding and packing the day before. Because I KNOW that if I don’t, my Addie self will panic and run amok at the last minute, forgetting things, being late, and arriving in a highly distressed state, if I arrive at all.

On the other hand, my Addie self gives my rather stodgy, rule-bound Autie self a lift, pushing me out the door or into doing something different – the novelty/stimulation thing, without which I’d be trapped into a very boring life indeed. It’s seen me move around the country, launch into new activities, go out to events I probably wouldn’t otherwise, and generally take risks my Autie self quails or quibbles at.

But frequently the two are just in conflict. My need for stimulation and variety clashes with the need for order and calm. My Autie perfectionism battles with Addie impatience. My Autie needs for tidiness and keeping stuff runs up against my Addie desire to just throw the annoying stuff out the window or into the rubbish. My Autie wish for cleanliness is confronted by my Addie inability to focus on household tasks until they’re done. My Autie self has evolved more-or-less functional routines that get at least some essentials done, but Addie self (or tired self) sometimes rebels against them. Sometimes I can find a way out of these impasses, but other times there’s no winning. I can end up frozen, confused, and overwhelmed, not knowing what to do.

Sometimes I don’t even know which is affecting me in any given moment. If I can’t seem to get out of my chair, is it Autie inertia, Addie paralysis, or simple tiredness? (Having Chronic Fatigue Syndrome doesn’t help.) If I don’t start a task, is it because of Autie perfectionism, or Addie dislike of chores, or my Executive Dysfunction? Sometimes if I know, I can overcome it, and other times it just doesn’t matter. I’m screwed, any which way.

And yet still other times, they converge with each other in the worst ways, eg when both my Autie and Addie selves become so overloaded that all I want to do is curl up in some safe, dark, quiet cocoon until my jangled nerves stop screaming.

There are ways they nullify each other’s effects, like the Autie orderliness I mentioned above that prevents Addie panic. But while my Autie self has helped me to overcome or prevent a lot of typical Addie problems, for instance I use a lot of helpful ‘tricks’ – multiple alarms, to-do lists, lists, notes, visualisations, etc, etc, etc, to stay organised - overall, it ain’t easy being both.

Being Addie is possibly having a stronger effect on my life right now than being Autie, because the realisation is far newer and to the forefront of my mind, not to mention I’m gradually stopping all the ways in which I suppressed it (I did the same thing with my autistic traits when I first realised I’m Autie). You have to adjust to a new knowledge of yourself, re-evaluate your mindset/approach to life, and I’ve largely done this around being Autie. But not for Addie, not yet. I don’t have a formal diagnosis either, it’s expensive and there are long waiting lists, especially for adults. So it’s still a work in progress.

But I’m getting there. And my life makes so much more sense now. Perhaps, finally, I can stop being ashamed of simply being me.

My Struggles With Executive Dysfunction

I’ve been thinking a lot about Executive Function Disorder. It’s mentioned frequently in the list of autistic co-occurring conditions, yet no-one really talks about it all that much. But it’s nonetheless one of the biggest problems for many of us.

Executive Function disorder (EFD for short) happens when there are differences in the chemicals in the brain which affect the frontal lobes, leading to problems with things like organisation, concentration, time and task management, prioritising attention, problem-solving, short-term memory, multi-tasking, impulsiveness and emotional regulation. It’s frequently linked to ADHD and autism, where we’re born with it, but it can also occur as the result of injury or illness which affects the same parts of the brain, eg stroke or Alzheimer’s.

This is me.

EFD is something I struggle with. Every. Single. Day. I work hard, every day - and I do mean hard - on Getting Things Done. My days are a constant wrenching process of me telling myself to do things, setting up reminders to do things, nudging, pushing and prodding myself to do things, even yelling at myself (usually silently, but yelling just the same) to do things. I make all kinds of prompts for myself – LOTS AND LOTS of lists, timers, alarms, notes in prominent places, scenarios in my head, etc, etc, etc - in my attempts to keep myself, my day, my house, my belongings, indeed my entire life, on track.

On good days, I’m moderately successful, complete at least some tasks, and feel reasonably okay about myself. I can give myself a pat on the back, and a breather at the end of the day. I feel like I’ve achieved something. Been something, or somebody. I’m okay. Sometimes I even have several good days in a row, and in the past, I would fool myself that I’d ‘changed’, ‘sorted myself out’, gotten rid of my ‘demons’. I was gonna be ‘all right now’. Not anymore.

Because, inevitably, come the bad days. The failure days. The days where I get out of bed only when something aches, or my body’s needs drive me. When I shower only when I can’t stand my stink anymore. When I eat only when my blood sugar plummets or I feel sick from not eating. When I feel stuck on the couch, looking at all the things that aren’t done, but somehow unable to get up, instead playing games on my phone, reading or just blobbing in front of the TV, or getting obsessed and spending hours online researching something. These are also the days when I tend to make it to appointments by the skin of my teeth, or go grocery shopping so late that half the perishables are gone, and all the sale bargains.

Often a reaction will set in, usually in the late afternoon or evening, when I become so angry and disgusted with myself and/or the state of my house that I rush around in a fury, trying to do as many tasks as possible, running my butt off till I collapse in exhaustion. But even once I do start a task, it’s all too easy to get side-tracked. I can end up with several jobs started, none finished, too tired to complete any, and feeling worse about myself than I did before. Some days, I even end up having a meltdown, or literally bursting out of the house for a walk, so that I can feel I’ve ‘done something’ with my day.

And of course I have to battle with myself to get any creative work done (even this blog post, which has been on the back burner for literally months), no matter how much I love doing it, no matter how much I *want* to do it, until the sheer pressure of both self-disgust and the images and words themselves force me into doing SOMETHING.

I could go on and on – there’s the whole thing, for example, of how once I set up a list, I won’t want to do anything on it, or how I’ve only achieved some measure of emotional regulation in the later stages of my life, or my always-irregular sleep patterns - but you get the picture, I’m sure.

 I’m a mess.

There are basically only four things that can propel me into action.

Firstly, dire physical need, like an achingly full bladder, extreme hunger or thirst, or being so tired I fall asleep on the couch.

Secondly, external impetus, eg a doctor’s appointment, occasions I need/want to attend, or needing to return books to the library before I gather fines. (And there’s usually A LOT of stress involved in all of these, as I check and double-check and triple-check EVERYTHING.)

Thirdly, my own disgust/anger/impatience with myself, as above.

And fourth, the urge to be creative, which has often been my saving grace, but which needs to surge up pretty strongly to overcome my natural inertia. Hence the weeks of creative inaction that are sadly all too common.

And that’s it. There is no ‘natural’ way of getting myself moving. No natural connections in the brain that enable me to ‘just do things’. I have to force myself, or be forced by external circumstances/demands. There is no other way.

It doesn’t help that my Chronic Fatigue Syndrome means I can’t keep on going once I start, I need frequent rests, but once I do stop, getting going again is, well, not easy. Ageing and related ailments also don’t help. I get more and more reluctant to start tasks that I know are going to be extra difficult. And of course, any change, any disruption or extra stress, just makes everything worse. I moved house last year, and to get back to even a degree of good habits has required an added effort.

I have improved over the years, and made progress in developing a more ‘organic’ way of responding to situations, as opposed to the harshness I used to punish myself with. But it’s still a struggle. Nothing ‘just happens’. I don’t know how other people just …get up and do stuff, going effortlessly and smoothly from one task to another. Why, I’ve always wondered, is it so easy for them, and so hard for me? I have absolutely NO – zero, zilch, nada, nix - natural impulses that keep me moving in this way, it’s an endless effort, and all too often, I still end up on the couch, telling myself to ‘get up now, get up now, NOW DAMMIT…’ Sigh.

In the old days, before I knew I am autistic, I never talked about any of this. I rarely mention it even now. It cuts too close to the bone, not surprisingly, as I’ve spent a lifetime feeling ashamed of ‘not being able to get myself together’, and going to great lengths to hide it. Some people have judged me ‘lazy’, ‘useless’ or ‘just not trying hard enough’, not realising how hard I’ve always had to work at keeping any order at all in my life. The worst part is that I believed it too, for too long, assuming I must be deficient or inferior for having to work so hard, and yet still not being able to be like other people.

And to be 100% honest, even now, it’s the one thing about my brain I would change, if I could. Other aspects of my autistic self, I’ve learnt to embrace or ameliorate, eg sensory issues. But this continues to be the biggest bugbear of my life, on a daily basis. So I will continue to wrestle with it, because, ya know, I want a life, I want to achieve things. Not to mention I don’t like living in filth.

But after 60+ years of trying, I’ve accepted that I can only manage it, not get rid of it, and I’m tired of living in shame, tired of hiding my ‘bad habits’, simply because my brain is different. This is how I’m built. On an online test for EFD, I scored 51 out of a possible 64. Not much I can do with that! I suspect that I would have scored even higher when I was younger.

But a frequent mantra of mine in recent times is ‘you are what you are. You can’t be other than what you are’. It applies to EVERYTHING that I am, including this. Learning about EFD, like learning about autism, has made all the difference to my self-esteem. I am what I am. I can be no other. I shouldn’t have to hide that true self.

And nor should any of you.