Wednesday, 27 May 2020

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?

Saturday, 4 April 2020

MY AUTISTIC REACTION TO THE PANDEMIC


You’d have to be living in a cave in some remote spot not to know that we’re in the midst of a worldwide pandemic. There’s really no other news on TV, or my Facebook newsfeed for that matter – except the deliberate light relief kind, like cat videos or music from European balconies.

I’ve felt a wide range of emotions in response to this. A ton of sad ones - compassion for those who are or have been sick, grief for those who have died, and empathy for those who have lost loved ones. Empathy also for those who know that they or their loved ones are at risk, those who are struggling to cope, those whose anxiety is going through the roof, those who find the whole thing just too overwhelming. I’ve sometimes found myself sitting on the couch crying, for instance when my country experienced its first Covid#19 death. I didn’t know the person, or anyone who’s died anywhere, but I cried anyway.

And anger. I’m furious at the hoarders and panic buyers who’ve emptied the supermarket shelves, depriving those of us who can’t afford to do this of things we need. Seriously? Who needs three hundred toilet rolls anyway? I’m especially angry though at the profiteers. How dare you. How dare you make money on the backs of people’s pain, misery and deaths. What kind of amoral pipsqueak are you? And then there are the callous and the don’t-care-I’m-all-right-Jack crowd, who put everyone else at risk. This is not a time for partying, people!

I’m also angry at those so-called leaders who haven’t acted fast enough, and have put more people’s lives at risk as a result. My (admittedly rough) impression is that ‘left-wing’ governments, at least in Western countries, seem to be acting faster and doing more to help ordinary people, whereas right-wing leaders have tried to delay acting, or even reverse some actions too soon, in order to minimise damage to the Holy Grail of ‘The Economy’. The inadequate measures of some governments sometimes seem akin to telling the Titanic’s orchestra to play on as the boat is sinking. I’ve wanted to grab them all by their collars and shake some sense into them.

But my strongest feeling is simply fear. It’s not myself I fear for, but relatives and friends, especially those who are in the ‘high risk’ category. Will they get sick? Will anyone I know die? I fear for my loved ones, especially a close relative who is pregnant with a much-wanted and longed-for baby, as well as my more elderly relatives. Plus no-one knows how long this pandemic will last, will it be over in a few months, or by Christmas? Will we acquire herd immunity, or will the virus mutate again? Will there be further pandemics? When will there be a vaccine? How much should I be scared?

Because nobody knows what the future will hold, even if we beat this thing. Maybe the world will only change in small ways – elbow bumping replacing high-fives, or a shift to more people working at home. Everyone becoming more scrupulous about washing hands. (I can’t help wondering what you were all doing before?!?) Or maybe we’ll become a more scared world, like we did after 9/11, with ‘viral’ becoming a personal insult and cause for social rejection. One big possibility is that we’ll become more callous about allowing the vulnerable – the elderly, disabled, chronically ill and homeless – to be sacrificed in order to ‘manage’ future crises. And many of us autistic and disabled know that we will be among the culled. These are just some of the possibilities.

Alternatively, we could have some kind of social revolution, a shaking up of the world’s complacency. This crisis has made the defects of neo-liberalist capitalism patently obvious. The modern practise of ‘just-in-time’ supply-chains, for instance, with few or no reserves, doesn’t work in a crisis. The profit-at-all-costs mentality and ‘lean, mean’ health services have left many at risk. The crisis has also shown that the real ‘essential people’ of any society aren’t billionaires or politicians, but people like supermarket workers, truck drivers, and medical personnel. Perhaps people will look at our socio-economic system differently after this.

Now, I get that lots of people are having similar reactions and thoughts right now. We’re watching a horror unfolding before our very eyes. ‘Unprecedented’ is a media pop word right now – we’re all in uncharted territory. Feeling sad, angry, frightened and/or overwhelmed is an entirely appropriate set of responses to a pandemic. ‘Quiet terror’, as one commentator called it. There are so many unknowns it’s frightening. Even the scientists and doctors still don’t seem to know that much about how this virus works, and they and governments all around the world are playing catch-up, with fatal consequences. It’s already being said that mental health is going to take a big hit from this.

But I do wonder if it’s going to be even harder for us autistics, not so much because of social isolation (this will vary from one autistic to another), but because of all the uncertainty. My own feeling is that we’re less resilient emotionally, and may take it harder, and come back slower, if at all. I know that a large chunk of my own sense of security has been removed, and I don’t think it will ever return. I already have a very low level of trust in the world, due to my experiences, now I have a new mistrust of Mother Nature as well.

A big part of our trauma is surely going to be how so many of the ‘normal’ things in our lives are either gone or in abeyance. I didn’t realise till now how many of the world’s activities I simply took for granted, even if I didn’t like them much. Something as ordinary as going to the supermarket has become like taking a ticket in a lottery – I never know if what I need will be there or not. What will I go without this week? How will I cope? And of course as for many autistics, fear can lead to catastrophising, where I imagine the worst, and then double and triple it.

My own country moved pretty quickly, more than a week ago, into a complete lockdown, and while I was processing it all, I pretty much fell apart. I’ve done a lot of compulsive watching of TV news, eating junk food, irregular sleep, and much more stimming, while my dreams have been full of earthquakes, violent car accidents and wandering lost in strange places in the dark. It’s been an effort to get myself even a little bit together, to make healthy meals, get to bed earlier - and to do some of my much-neglected housework! I’ve had to cut down my hours of watching TV news, and stayed off Facebook until I felt able to cope with the onslaught.

Because I have a deeper level of fear, which I find hard to describe, but which seems to be a sense of the world fracturing right in front of my eyes. I’ve been floundering, grappling with this sensation of everything falling apart. I guess that’s what an international emergency does to you. An old W B Yeats poem keeps coming to mind, about how ‘the centre cannot hold’, and ‘anarchy is loosed upon the world’. (Yes, I know I’ve probably been reading too much dystopian sci-fi!) As a new order/reality takes shape, and I work out the new rules for it, I hope this fear might ease.

And for all we know, it won’t be like any of this. Maybe there’ll eventually be a vaccine, or life-saving treatments, and life will just go back to what it was. Or something like it. Maybe. Right now, I’m just trying to ride the wave, and take one day at a time. Nobody knows what’s going to happen next. And that’s the hardest thing for any autistic.

Sunday, 8 March 2020

BECAUSE I CARE


I know I’ve said that I’d rather not write again about dealing with people with borderline personality disorder. But it seems that I still have some things I need to explain. I’m getting kind of tired of hearing that we mustn’t point out bad behaviour on the part of people with personality disorders, particularly Cluster B ones, because, y’know, it’s ‘demonising’ and ‘stigmatising’ and ‘ableist’ and all.

But it’s not stigmatising to stand up for victims of abuse. It’s not demonising to call out an individual or even a group on their negative behaviour patterns. It’s not ableist to point out that people with personality disorders are a high risk group for both abusing and being abused, precisely because of their disorder.* The very characteristics which cause them to either get a diagnosis, or for others to suspect they rate one, unfortunately predispose them to it. **

Because you don’t have to be a rocket scientist to figure out that people who have unstable emotions, a fear of abandonment and poor boundaries (borderline), or massive but frail egos (narcissist), or aggressive tendencies and lack of empathy (anti-social), are going to have problems relating to others. Even the desperate need for attention of those with histrionic, the lesser-known Cluster B disorder, could lay them open to abuse. I’ve also, sadly, seen many with personality disorders be abusive to some, but then get trampled on by others in turn.

But here’s the thing – people with personality disorders are entitled to support – but minimising and excusing bad behaviour is not the right sort of support. It’s no use complaining about being ‘stigmatised’, when it’s your very own behaviour that has created that stigma. People have become wary, and weary, of being victims of manipulation, abuse, angry tirades and distorted world-views. To try to ‘remove the stigma’ without addressing the ROOT CAUSES of it is to simply attempt to silence the victims of that behaviour.

Not to mention that I find it ironic when I get accused of ‘demonising’ by, for instance, someone with a personality disorder trying to bully another person into submission. Or I receive a message from another telling me how they’ve ‘changed so much’ – right in the middle of the kind of truth-twisting rant that proves, um, no, actually they haven’t. This kind of curious double-speak, or just self-dishonesty, leaves me unsure whether to laugh at the irony or just shake my head in weary disbelief.

The other accusation that’s come my way recently is that I’m uncaring and ‘lacking in empathy’ for those who have suffered the trauma/abuse/etc that created these disorders.

So let me make something clear – I very much do care.

I care about the whole world and its pain. I care about those who are abused or raped or tortured, about people dying in horrible wars, about First Nation peoples being deprived of their lands or culture or rights, about how so much of the world’s wealth is being hogged by greedy billionaires, about sexism and racism and classism and ageism and homophobia and transphobia and Islamophobia and anti-Semitism and every other prejudice and ‘ism’ you can name. I’m utterly opposed to oppression and hate of any kind, and want the world to be a much better place.

I know I can’t really heal the entire world, but if I could, I would. I’d put balm on all the wounded spirits, help the faltering, house the homeless, embrace the refugees, pick up those who have fallen… and I’d heal the environment too. I care because that’s who and what I am. Call it a ‘saviour complex’ if you like, or a ‘bleeding heart’, but this is me. It’s my nature to care. I don’t want anyone to feel pain or fear or loss, to suffer abuse or maltreatment of any kind, whether they’re on the spectrum or not, whether they have a personality disorder or not, or whatever else their life entails.

So yes, I care. I may choose not to associate with those of you with personality disorders because of my own past history, but I do care about the trauma you’ve suffered. No-one should have to go through that. No child should be abused, manipulated, neglected, and have their psyches twisted and damaged. It was seeing your pain, in part, that kept me in a relationship for nearly ten years, and more long months in a toxic ‘friendship’. But ultimately, it was the results of that which also drove me away. Because there is only so much an individual can take.

And I know you better than you think. (From this point on, I’m going to talk only about borderliners, because that’s the condition I’m most familiar with. But those who’ve been closely associated with other personality disorders can perhaps tell a similar story.)

I’ve seen your pain, and how it drives you to lash out. I’ve seen your terror of abandonment that makes you push away the very people you want to hang on to. I’ve seen your bone-deep anger that conceals an even deeper misery. I know that buried somewhere inside you, is a small child who knew something wasn’t right, but who got all kinds of messages that told you otherwise, till you were overwhelmed and lost your sense of self and safety. I’ve seen how you flounder around, trying desperately to compensate for not having a solid psychological base. I’ve seen the abyss within you, even when you were/are too afraid to face it yourself.

And most importantly, I’ve seen that on a very deep level, you’re not happy. It’s not called a ‘disorder’ simply because mental health professionals like to slap labels on you. You are ‘dis-ordered’, your true self compromised when you were so young that you don’t even realise how damaged you are, how dysfunctional your connections to others are, how twisted your basic assumptions about the world/life/other people are. You don’t seem to get just how much your style of personal interaction is neither normal or desirable. Not to mention that you are a high risk group for suicide, or, more likely, simply dying old and bitter and alone.

And that’s the true sadness of your condition, not the so-called ‘stigma’.

But here’s the cruncher – having a personality disorder is not something you simply have to accept. It’s not something to hang an identity on, but a problem that needs to be addressed. It’s not set in stone - though it can be stubborn - and you CAN heal from it. And I want that for you. I want you to be healed. I want you to burrow down into that deep well of long-held sorrow, to root out the pain and trauma, to lance the long-festering wounds in your psyche, to experience psychological ‘disinfecting’ and healing. I wish this for you.

But, rather like an alcoholic, you must first admit there’s a problem, before you can work on it. I assure you that I’m not minimising the difficulties of this path. It will be long and hard, and depending on your location and resources, therapy might be out of your reach. This doesn’t mean that you can’t work on challenging and changing yourself. Taking responsibility for your words and actions, and the results of them on others, is an essential start. Not assuming that those who dare to challenge you are prejudiced, demonising, ableist, don’t understand you or your condition, etc, etc, is also essential. Consider that others might understand you all too well, but that you’re not listening to what they’re trying to tell you. Understand also that just because your BEHAVIOUR is bad, doesn’t mean that we think YOU are bad. You’re simply damaged – but the damage can be healed.

You don’t – you really, really don’t - have to live life at the mercy of your tempestuous emotions, your fear and anger and compulsions. You CAN have a calmer, more stable and fulfilling life and relationships. It IS possible. But you won’t get it by sitting back and complaining about ‘stigma’, without doing the work. Nor will you get it by gathering in PD groups to commiserate about how ‘misunderstood’ you are. I want you to challenge yourself, and others with PDs, to begin the long road to a better life. Because I believe you can do it.

And I want you to be healed.

I want you to be healed. I don’t think I can emphasise this enough.

I want you to be healed. For your sake, and for the sake of those around you.

I want us all to be healed.

I want a better world. For all of us. For everyone.

BECAUSE I CARE.

Never doubt it.
___________________________

*Re ‘disorders’ - it’s true that autism itself has long been considered a ‘disorder’, but we now know it’s not. And something genetic and inborn in us, that’s ultimately simply a different kind of brain, is obviously nothing like emotional damage acquired through traumatic experiences.

**I’m aware that many autistics are misdiagnosed with different personality disorders, probably in all the Clusters. Reading some of the Cluster A descriptions, for instance, is like reading a textbook list of autistic traits. And I know also that those who do have a personality disorder may also may have a second one, or other mental health issues, eg depression, anxiety, PTSD, etc, which can of course complicate things.