I'm A Marginal Person

I live on the margins. I’m a marginal, a shadow creature, one of those who most people don’t even know exist, or are only vaguely aware of. I identify with all the other marginal – and marginalised - beings, who inhabit the world that lies beyond the harsh glare of nine-to-five, two-point-five mortgages, two-point-five kids and the house in the burbs. You know – the ‘normal’ world, inhabited by the straight white, cis, hetero, able-bodied, neurotypical, married, everyday people. Like you see on TV, in ads and programs and movies and so on. Normal people.

Please understand, I have nothing against them, I don’t dislike them or anything, in fact I find many of them fine people. I just don’t identify with them, and I can barely comprehend what it might be like to be them. And I guess they don’t really understand people like me either.

Us, that is. The not-so-normal ones. The socially rejected or scorned or ignored. The outsiders and the strangers and the simply ‘strange’. The autistics, the ADHDers, the dyslexic and the dyspraxic and the whole shebang of neurological ‘difference’. The gays and the dykes, the bis and the pans, the trans men and women, the aces and the aros and the happy-to-be-singles, the demis and greys and enbies and queers and all the rest. Or, for that matter, those who are not whiter than whitey-white, the immigrants, the disabled and chronically ill, the poor, the welfare beneficiaries, the homeless, the addicts and the mentally ill, not to mention the writers and artists and musicians and other creative types, and hell, even the hippies and nomads and rebels of all stripes, in fact pretty much anyone who finds their reality is not included in this supposedly wonderful ‘Norm’.

I don’t mean that I, personally, am all of these things (though I am quite a few of them), or that I know what it’s like to be all of these things. I mean that I most emphatically know the experience of being ‘not mainstream’, of being outside that norm, and so I empathise far more with these groups, collectively, than I do with the ‘normals’.

I also understand that many fall outside the norm in only one way, and wouldn’t consider themselves ‘marginal’ or even perhaps ‘marginalised’, and possibly are fighting to be included in the mainstream. How much any given individual feels marginalised tends to vary according to how many non-mainstream attributes you have. One, and you may reject any idea of being ‘marginal’. Lots, and you’ve usually given up on normal. Some don’t even care about it anymore, and some positively relish their marginal status. While if you have just a few attributes, you could be anywhere in-between. It’s a very individual thing, and no-one has the right to tell another how they should see themselves, or who they should identify with, or how they should live their life.

But all of us on the margins - beyond the boundaries of ‘normal’, in one way or another, and sometimes in multiple ways, being pushed further and further out beyond the back of beyond, in the eyes of ‘normals’ anyway - we inhabit our own universe. In that universe (or perhaps it’s a variety of different universes?), we connect, sometimes, with each other, and fail to at other times. We network, and fight, and disagree, and fall apart, and carry on anyway.

And our lives, our universes, are all too often invisible to the ‘normals’.  If they do encounter us, they sometimes refuse to acknowledge that our lives are actually different to theirs. “But everyone feels like that sometimes.” “Aren’t we all a little bit autistic?” “What do you mean, you don’t like sex/romance? Everybody wants a partner!” “I’d kill myself if I had your life.” “He/she’s just making a joke, it’s not really racism/sexism/homophobia.” “Non-binary? That’s not even a thing!” “But you’re in our country now, you should speak English.” And so on, and so forth.

But we know. We know our own truths. We live them. We know our day to day struggles are real – everything from wheelchair access to sensory overwhelm to pain management, from the lack of services to the lack of acceptance to the many micro-aggressions. And sometimes not-so-micro aggressions. We know it. Does it make us better people? Maybe. Sometimes. And sometimes not. All too many of us are simply left bitter, angry, hurt, sad and reeling away from the world. And even if we are stronger for it, I think most of us would still rather go without all the stuff we went through to get there.

Because we’re stressed out. It’s not fun to feel excluded, to never or rarely see our lives depicted in movies or on TV or in books or even just in a damn ad. (And why are so many movies and TV shows, even now, about The White Male Experience, especially the whole white-male-saving-the-day thing? I could write a whole book on this one, and no doubt someone already has. But do the movie and TV people ever think that even many of those who are white, might like to see something, y’know, different?)

Anyway, all this feeling invisible, ignored, overlooked, not valued or recognised, being the recipient of all sorts of bad treatment - prejudice, stereotypes, belittling, rejection, misunderstanding, mocking, ridicule or even outright violence – none of it is fun. But it happens. And it happens so often, and even if we complain about it, it’s obvious that the ‘normals’ don’t much care, really.

And that’s what cuts.

It’s not being different that’s the problem. It’s how others respond to us. We are what we are. Whether we hate it, love it, simply accept it or just wish we weren’t in a particular category, we are these things. And can’t be anything else. So why shouldn’t we feel pride in what we are? Why shouldn’t there be gay pride, indigenous rights movements, multi-cultural celebrations, autistic pride? Why should we not campaign for recognition, for human rights, for acceptance, and so on?

And what’s wrong with being different? Why are so many insistent we all be the same? What’s so great about being all alike? Why do the normals get to decide what we should aspire to, and why do they think they’re so wonderful that we should all be copying them anyhow? Did it ever occur to them that we just wanna be our own goddam selves, and not copies of them?

And I can’t help wondering, in the midst of this Covid crisis, whether it’s going to change anything for us. For most of my life, when I’ve looked around, I’ve seen a world increasingly skewed towards the superficial, the self-serving, the frenetically materialistic, and all too often the simply nonsensical. But this crisis has forced a change in many (apart from the usual idiots of course), it might even be that some serious changes will happen.

Our Prime Minister, Jacinda of international fame, has repeatedly urged us to ‘be kind’. And certainly there has been a surge of public-spiritedness evident, along with the Zoom conferences, the gee-we-can-work-efficiently-from-home-after-all, the endless hand washing and the social-distance-at-the-supermarket thing. But has this kindness been extended to real understanding and support for us marginal people? (Was it ever really anyway, except as patronising acts of inspo-porn, or other ‘feel-good’ exercises?) Will there be a wholesale change in how we’re seen? Or will this new-found public milk of human kindness vanish along with the need for hand sanitiser?

Who knows?

But whatever shape the future takes, one thing is certain – that I’m a marginal person, and always will be. The marginalised are my people, my tribe, and I’m happy with that, even if I’m not happy with how we’re treated.

How do you identify?

Disability, Spoons and Cats

Recently I realised that my elderly cat has gone completely blind. She’s probably been getting that way for some time, but for ages I mistook it for other things. When she meowed to be let in, then hesitated in the doorway, I would get impatient, thinking it was the usual cat-thing of “Oh! The door is open! Hmmm, do I want to go in or not…” Being a typical cat, in other words. But then I noticed she was blundering into furniture, and one day she fell off the deck. I’ve never seen such an expression of feline terror in my life. (She wasn’t hurt, just scared.)

Since, then, I’ve been watching her negotiating her environment, learning to feel her way to where she wants to go. It’s as if she’s saying to herself “okay, couch, couch, chair, couch, my food should be straight ahead, oops wall, okay fridge, the food should be here somewhere…” Her bowls are just a couple of feet further, but she will still deviate off course, blunder into the cupboards or stove or even the laundry, walking right past the food, and turn around a few times before finding it. Finding her way out is equally roundabout and laborious. (Yes, I do sometimes take pity on her, and take or guide her to her food, but it’s not always obvious what she wants, and I think she has to learn her own ways to where she wants to go, as I cannot be with her every minute.)

But in watching her, it’s struck me all over again just how labour-intensive it is, having a disability. Sometimes, she just gives up, and settles down for a nap, wherever she happens to be, in a corner or doorway or right in the middle of the floor. I know how that feels, when your spoons are all used up for now, and you just need to quit trying, and rest. She sleeps a lot, and so do I.

All of which reminds me of how exhausting life was when I broke my ankle and then my hand, and was in a wheelchair for several weeks. Even the smallest thing, like getting up from the couch, or fetching something from another room, took a lot of time and energy. I am fortunate, yes, as I can walk again now, but the ankle will probably never be what it was, and still gives me problems. Add in arthritis in my knees, Chronic Fatigue Syndrome and being autistic, and the simplest things can still consume a lot of my spoons. 

Take something like a simple walk round to my local shops – something most do without thinking twice about it. For me, it starts with estimating whether or not I have the energy to walk, and how sore is my ankle already, or should I drive. I’m photo-sensitive, so I have to make sure I have my cap and sunglasses. I literally watch every step I take, as any misstep will cause (added) pain. As there’s no footpath on my side of the street I have to be extra careful of some patches of rough, uneven ground. And I sometimes think – if it’s this difficult for me, how much more so is it for those permanently in a wheelchair? When I was in one, I found the most trivial things were an obstacle or a trial – kerbs that didn’t look that high, or those pretty-looking cobblestones in our town’s main street, which actually rattle the bones something dreadful.

And when I do get to, say, the supermarket, there are more challenges. Maybe it’s more crowded than I thought it would be, or I have to hold my breath walking past the seafood counter, as it’s particularly pungent today. Or I need something from up high – the strength and balance of my ankle is not what it used to be, and I have a very real fear of falling. Or they don’t have an item I need – inducing oh-God-what-do-I-do anxiety, even panic or near-meltdown. I have to negotiate all of these, all the while my ankle is hurting, my knees not wanting to take the pressure of pushing a trolley or carrying a basket, and I’m starting to wonder if I’ll have the energy to walk/drag myself home.

My life is full of daily negotiations like these. When I walk down my front steps, the ankle, knees and still-tight calf muscles and tendons mean I need to hang onto the railing. (Steps without railings now make me shudder.) Going up them is not much better. Arthritis doesn’t only cause pain, it makes the joints weaker, and so I must use extra energy to push myself up each step. My days of bounding up flights of stairs are gone. Even getting in and especially out of my car can be tricky, I have to manoeuvre so that both feet swivel through the door at the same time, pulling my bag or bags with me, all the while trying to prevent my elbow from accidentally beeping the horn! Getting in and out of bed is also a matter of calculating movements. Going anywhere is a matter of looking at what it will take, what I might face there, and so on.

Other disabled can no doubt supply their own lists of such daily negotiations, the things that consume their spoons. I have of course always been autistic, and sadly when I was younger I didn’t know why I struggled with so many things others found easy. I thought I was somehow inferior, a lesser breed of human being. 

There are many non-disabled who still think this of anyone with a disability, they think that it’s a fate worse than death. Literally. When I was younger, I leapt up steps and blithely walked for miles. When my cat was younger, she would saunter in and go straight to her food or the couch. When you’re not disabled, you don’t give such things a second thought. And so people don’t really see how often we have to, how we not only start out with fewer spoons, but use more of them in everything we do.

But having to do this, to make these constant little, or not-so-little, calculations and negotiations, doesn’t mean we’re lesser beings, or to be pitied, or scorned, or shunted aside and ignored. We’re not ‘better off dead’. We’re human beings, even with our extra trials and tribulations. We need accommodations and support, yes, but most of all we need understanding and patience from others. I have this to say to them - if we say we can’t do something, take our word for it. If we say we need to leave, don’t scoff at us. If we struggle with something, don’t say ‘It’s not that hard’. Accept our truth – because who knows, you might live it someday too, or someone close to you might.

I'm Tired of People Defining Me

I’m tired of people trying to define me. My whole life, people have been telling me who and what I am, how I should act or react, and how I should live my life.

It started very young. When I complained about bright lights or strong smells or loud noises, they told me “it’s not that bad”, and I should “stop being such a whinger”. When I was a teenager, I was told I “shouldn’t be so anti-social”, and I should “just make friends”, as though this was easy. If I tried to say I couldn’t do something, I was told that “of course” I could do it, and that I was just being “unco-operative”.

If I wore certain clothes that I felt comfortable in, I was either ridiculed or pressured into wearing more “fashionable” clothes. I was told that my behaviour was “rude” and “un-ladylike”, and that I must be “nicer” to people, especially men. Later, after I became a feminist and came out, a different bunch of women let me know I was expected to be a “right-on-sister” instead - a different set of expectations, but no let-up.

My differences were cast as personal flaws or deficiencies, and I was told that I just needed to “try harder”. They would tell me to “just relax” and “be myself”, but when I did, they said “not like THAT!” If I expressed my real feelings or thoughts, people told me I was weird, or that “nobody” felt like that, and that I needed to “shape up my ideas” or “get real”. Or they would tell me I “must” feel such-and-such, or have this or that neurosis, because of my behaviour or attitudes. I was told I should “speak up more”, or that I was talking too much and should let others have a turn. I was “too quiet” or “too loud”, “unfriendly” or “clingy” or “nosy”, and on and on. No-one, it seemed, was quite content with me, no matter what I did.

My (now-ex!) partner would oh-so-confidently explain to me what I “really” felt. Or that what I felt “wasn’t normal”, that it was symptomatic of all that was wrong with me, and that if only I listened to her and did what she told me to do, and became what she told me to be, all would be well. She told me exactly what sort of person I was, and what my faults were, in great detail. According to her, I was a terrible lover, a lousy friend, a bad mother and, she implied, deficient even as a human being.

When I became ill, some thought I was “just being lazy”, or a “piker”. Even when I finally got diagnosed with Chronic Fatigue Syndrome, it didn’t stop. There was the alternative healer who told someone else that it was a “pity” I’d been diagnosed, implying I’d use it as an “excuse” to “wallow” in my illness. And the counsellor who asked one day why didn’t I “just go for a run round the block?” This same counsellor also once spent almost an entire session ripping into me for being on a benefit. It became obvious she had a low opinion of beneficiaries, and me for being one.

Even those who accepted the diagnosis and meant well, would tell me I needed to “just take this seawater solution”, or do this or that pet therapy of theirs, or some other “miracle” cure, or “just think positively”. Or that the vitamins I was taking were “just expensive pee”, always without asking me what worked for me.

And then I discovered Asperger's and autism, and oh look, another lot of definitions. The ‘experts’ solemnly pronounced me incapable of empathy, of having emotions, of understanding others or even myself, of being able to relate to others or be a good parent, etc, etc, etc. It seemed that, once again, I was a deficient creature, barely even a human being, in the eyes of others who had never even met me.

Being autistic and physically disabled aren’t the only things about me which others have used to try and define me of course. Religions have tried to reduce my innate sexuality to a mere “lifestyle choice”, and tell me that I’m a “sinner”, and even claim, as one NZ religious leader has, that gays cause earthquakes (no, I’m not kidding).

Men have tried to ‘mansplain’ things to me, told me I “should smile more”, or suggested I “don’t understand” how the world works. Able-bodied people have tried to ‘able-splain’, in the same patronising fashion, without bothering to find out first what I actually already know or don’t know. Or they’ve treated me as if I was mentally deficient, again without bothering to find out anything about me.

Sometimes even other autistics don’t understand me, their image of me seems to be incomplete, or even totally wrong, like the one who told me I was a “man-hater”, when I challenged his sexism. It never seems to end.

But my feeling now is – NO.

NO.

Enough.

I’ve had enough of this. I refuse to allow my life, my very self, to be defined by anyone else, ever again. I am what I am, and that’s good enough for me. And it’s just going to have to be good enough for the world too.

Everyone has their bottom line, the point beyond which they won’t and can’t go, and this is mine.

I don’t mean I’m going to go around wildly starting arguments or pushing anything on anyone. I do mean I will stand my ground, and no longer allow others to define me, to tell me what I am or should be or how I should live my life. I will back off, but I won’t back down.

This is me. The real me, as defined by me. Get used to it.

About That Aspie 'Superiority'

For a while now, I’ve been seeing some aspies talk about how we’re somehow ‘better’ than those not on the spectrum, more advanced, the next step in evolution, inherently superior in some way – intelligence, honesty, integrity, focus, empathy, whatever. I would like to make my position clear on this subject.

I don’t believe we are superior to those not on the spectrum. It’s tempting to think this, comforting even, when we are so often criticised or labelled ‘inferior’ in some way. And NTs have so many baffling behaviours - small talk, lack of directness, ‘woolly’ or illogical thinking, etc, etc, plus many of us have experienced the worst kind of NTs – the users and abusers, the bullies and the bitches, the back-stabbers and the exploiters. But there are many lovely NTs out there too, caring, kind, helpful, intelligent even, willing to listen and learn, to support us on our journeys, and to at least try to understand us – not to mention NTs have one big advantage, ie the ability to navigate social networks we can only dimly perceive, let alone weave ourselves into. And not all autistics are ‘wonderful’, or all ‘indigo children’, or beautifully empathic, etc, either. I’ve met or heard of autistics who even other autistics can’t tolerate, who are sex addicts or other unsavoury things, who really do lack any compassion or empathy for others, even those who are violent schizophrenics, psychopaths, narcissistic or borderline personality disordered. Even ‘ordinary’ aspies/auties can have their negative sides, or their bad days. We are definitely not inferior to NTs, we have our strengths, but we are not all sweetness and light either – and I don’t believe we do ourselves any favours, if we try to picture ourselves as this.

I also don’t believe we are the ‘next step in evolution’. I think this belief is based on the apparent (and I stress apparent) rise in our numbers, as well as, perhaps, a hope that there is some purpose to our existence, and our trials in life. But that doesn’t explain why at least some of those trials are NOT the result of others’ treatment of us, or their lack of understanding – for instance, our sensory difficulties, our executive dysfunction, our often severe dyspraxia, our difficulties with communication, our erratic and often uncontrollable (even by us) emotional states, our frequent lack of a sense of danger, especially as children… Evolutionary advances are all about enhancing the ability of the individual and hence the species to survive, and hopefully to flourish. None of the above traits seem to do that, as far as I can see. In fact the last of them can actually be counter-productive to survival – think of the many autistic children who drown every year, through a combination of that lack of awareness of danger, coupled with an attraction to water and ‘escape artist’ tendencies.

Also, my own experience, as well as the anecdotal evidence and others’ analyses of various historical figures, suggest that we have always been around, we just weren’t called autistic. We were at least some of the ‘lunatics’ locked up in asylums, the ‘simpletons’ kept in back rooms or minded by relatives, we died as children or young adults from abuse, assault or lack of care, or, if ‘higher-functioning’ and able to look after ourselves, were labelled ‘eccentric’ or ‘loners’, and/or found jobs and positions where our need for rigidity and order was tolerated or even encouraged, even if we weren’t especially liked. We have always been around, and unless they somehow devise a way to wipe us out, we always will be.

So, if not the next step in evolution, or superior, what do I think we are?

…HUMAN.

We are first and foremost human beings, with all the glories and the imperfections, the beauties and the blemishes, the mediocrities and the marvels, that being human entails. I don’t want us to be seen as superior or advanced. I want us to be seen as human beings, entitled to all the same rights and responsibilities and privileges and burdens as other human beings, albeit we have to exercise these rights etc in our own particular ways, and often need accommodations or adjustments in order to live life to the full.

Only by finally being seen as completely and fully human, albeit a different type of human (which we are often NOT, right now, hence my need to write that ‘Autistic Bill of Rights’ recently), will we be able to overcome the discrimination, abuse, rejection, misunderstanding, unemployment, alienation, marginalisation, etc, that is currently our usual fare, and take our rightful place in the world. We sell ourselves short, if we aim for anything less than this fully human and equal status.