THEY DO IT BECAUSE THEY CAN

Like a lot of people, I’ve been watching the Black Lives Matter protests. What strikes me every time I see the clip of that cop kneeling on George Floyd’s neck, is how little he’s worried about being on camera. He’s watching the bystanders, sure, but only, it seems to me, to judge whether they’re a further threat. Being videoed kneeling on someone’s neck till he dies? Nope, not a worry.

Why? Because cops like him have done this, and worse, to many black or brown people in the past, and gotten away with it. And I bet that he’s not even that worried now, because even in the rare cases where charges are laid, cops usually get acquitted, or a minor punishment. He’ll be expecting the same. It’s not over yet, not by a long shot.

Because pretty much everything done ‘in the line of duty’ has been excused or overlooked by complicit police administrations, passive civil authorities, and a judicial system reluctant to believe any wrongdoing on the part of police, even when confronted with glaring evidence of it. And so they  assume they can get away with practically anything.

The signs are there, for anyone to read. There’s some kind of corruption of spirit – there’s no other way to describe it –  at the very heart of policing. They see themselves as ‘heroes’ fighting against ‘wrongdoers’, who can be pretty much anyone else. (But especially black and brown people, I believe.) The result, of course, is that police themselves have now become an enemy to many.

This ethos is so pervasive, it’s even in fiction. Watch any cop TV show or movie, read any detective novel, a cop will lie or beat up someone at some point. Or the heroes-against-the-world thing will pop up. ‘It’s hard being a cop, no-one else understands’. Etc, etc, etc. And bear in mind that these shows are usually sympathetic to the police. Yet even there, the corruption has become the almost-unremarked-upon norm. (And before anyone says it, yes, I can tell fiction from fact. My point is that it’s so widespread in fact, it’s permeated into fiction.)

A note here – I went on my fair share of protests and demonstrations, back in the day. I’ve seen cops insult or verbally abuse people, threaten violence, commit it, do various dirty tricks, and even lie in court. There was a time in my life when if I saw a cop in the street I’d want to vomit and run away. So even though I’m whiter-than-white, I’m not surprised at all the videos that have emerged in recent years, though I am angry. I back BLM two hundred percent.

However – though I’m not wanting to divert the spotlight away from the Black Lives Matter movement at all – that is NOT my intention here – it’s worth noting that there is a deeper problem, an underlying pattern, which is not limited to the interaction of cops with black and brown people.

I was reminded of this recently when watching a documentary on Harvey Weinstein, and how he preyed on women for years. And he’s only one of the many, many authority figures – religious leaders, politicians, sports coaches, psychotherapists, entertainment top-dogs, etc, etc, who have long targeted the young and vulnerable of both sexes. And then there’s the abuse or even murder of autistics and disabled, by those who are supposed to be caring for them. Or the (mis)treatment of psychiatric patients, or the homeless… the list goes on. Practically anyone ‘different’ or ‘powerless’ can be, and frequently has been, a target.

In all these cases, those doing this harm do it because they can.

Because they’ve gotten away with it over and over again, for years, decades, even centuries.

Because they were in a position of unquestioned, unassailable, and unchallenged authority.

Because their victims were perceived as ‘lesser than’, ‘defective’, and/or just plain unimportant, not even worthy of life in some cases.

Because those who could have stopped them did nothing, in fact chances were they’d done it themselves, and thus it was ‘business as usual’.

Because even if their transgressions came to light, and complaints were made, the word of the powerful was always taken over the complainants.

Because even if a complaint was upheld, the transgressions were seen as minor/unimportant, or their actions were ‘justifiable use of power’.  

Because their victims were silenced in various ways – through threats, coercion, money, or just being ignored or ridiculed.

So it was okay for cops to beat up or kill black people, or for them to harass or beat up homeless people and destroy or take their belongings (and heaven help those who are black and homeless), for entertainment moguls to put aspiring actresses through the ‘casting couch’ ordeal, for priests to molest children and then simply be moved on to another parish, for professionals to put autistics through various torturous processes to make them ‘normal’. And so on, and so on.

Because the victims weren’t, and often still aren’t, considered important. They’re ‘the other’, the ‘different’, the ‘lesser than’, not worthy of the same rights as ‘normal people’, and thus it doesn’t matter what happens to them. And in the case of some groups, such as black people and autistics (once again, heaven help those who are both these things), even a ‘threat’ of some kind which has to be obliterated. So that others of their ilk can be kept in line. Subservient. Uncomplaining. Knuckling under to the Powers That Be.

THEY DO IT BECAUSE THEY CAN.

This is an important point to remember. Because they can, and have, gotten away with it for a long, long, long time. This corruption isn’t only in the police, but at the core of every imbalance of power. It’s a sickness at the heart of a world where those with power simply assume they have the right to not only define ‘the other’, but to shape and control their very lives. Up to and including whether they even get to live or not.

But at a certain point, the oppressed have had enough. They see that nothing but their rebellion will stop it. And so they say ‘no more!’ Black Lives Matter says no more. The ‘Me Too’ movement says no more. Autistic Rights says no more. Social movements since the 50s and 60s – civil rights, feminism, gay liberation – say no more.

And that’s the whole point of these protests – that black people, along with their allies, have had more than enough. They’re saying that it’s way beyond time to make the oppressors get their foot, or their knee, off black necks. Literally and metaphorically. To end this sickness, and root out this corruption.

If you still don’t understand this, if you’re still into ‘all lives matter’, or going ‘well they shouldn’t riot’, then you have missed the point entirely, and you’re going to end up on the wrong side of history.

Time To Step Up

A change has been happening for me lately. And that change is that I’ve realised I want to more actively fight for autistic rights, change the public perception and treatment of autistics, etc. To be more active as an advocate, in other words.

So why now, some might ask, and not years ago? 

I think the answer to that is many-sided. When I first began to realise that I might be autistic, nearly ten years ago, I had only a negative picture of autism. It wasn’t till I found other autistics that I began to see the real people beyond the stereotypes, and to understand just how much being autistic has shaped me. Nonetheless, it’s taken a lot of time and effort to dismantle the negativity piece by piece, to see it for the pure BS it all too often is, and to actually feel pride in being autistic. 

And, like so many autistics, I was damaged, carrying a truck-load of emotional crap from my years of struggling to survive in a world that, to put it mildly, is uncongenial to those on the spectrum. I was scared, angry, drained, cynical, baffled and repelled by the world, and in retreat from it. Most of all, I was hugely ashamed of my ‘difference’. I could not see it, or myself, in any positive light. In fact I’d become so used to concealing my true self, that it took years before I could even talk about it with my family, let alone ‘go public’ as an autistic.

Then there’s my own personal history. I was active in the feminist and anti-racism movements in my mid-to-late 20s, and then basically burnt out, and dropped out. I’d had enough. Once you’ve been to one demonstration or protest march, chanted the slogans and waved the banners and placards, you’ve basically been to them all. I also felt I didn’t have either the skills or the personality that it took to be a leader, and I was bored with being a ‘foot soldier’.

I was physically tired too. I’d been trying to do too much for too long – university study, political activism, struggling to survive on a benefit, being a solo parent, attempting to have some kind of social life and/or relationships, and all the time dealing with my ‘difference’. I was pushing the boat out further and further, trying to please, trying to be what I thought I ‘should’ be, trying to force myself into normality. It didn’t work, and I collapsed. I didn’t know what it was, but I knew I wasn’t well.

I still didn’t take the care of myself I needed to though, and a few years later I collapsed again, fleeing to the country to try to heal. Eventually, after ten years of illness and a third and even more drastic collapse, I was finally diagnosed with Chronic Fatigue Syndrome, but by then I was almost bedridden. My nights were filled with pain, my days with exhaustion. I was unable to do pretty much anything, I couldn’t even read. It took years to come back from that, a long, arduous and often boring recovery. And I still live in fear of stressing myself out to the point of another collapse, which I might not come back from again. I have become ruthless about looking after myself – because I must.

Hence I came into the autistic community with a whole heap of issues, and it’s taken me a lot of time to work through them. Even when I became aware that others were fighting for us, I felt that I was too tired, too old, too cynical and withdrawn from the world to contribute much. Or perhaps even that my writing was sufficient contribution to the ‘cause’.

But this past year or two, despite all of my issues, or maybe even because of them, I’ve come to see that none of these things are important anymore. And that the only way I can truly exist in this world, or co-exist with it, is as a thoroughly authentic autistic – proudly and openly so. Making the world adjust to me, in other words.

So I’ve realised it’s now time. It’s not enough for me anymore, to sit back and let the brave few go out there and fight for my rights. Moreover, I think it’s time not only for me, but for lots of us to get involved. Because being out there, often as isolated voices, is taking a heavy toll on those few. They’re getting abused, slandered, threatened, psychologically battered and bruised, some are even getting burnt out from their efforts. They need our help and support.

I know that many of us have been focused up till now on building community, which is of course hugely important too. But that task is pretty much done, at least online, and if we want our community to ever be more than simply a refuge from an unsympathetic world, then it’s time to use it as a ‘launch pad’.

I also suspect that while most of us are probably supportive of the advocacy others are doing, many perhaps think that joining them is too hard, or that they have too many struggles already. I know just how hard life can be as an autistic, and that we all have multiple issues to deal with. But if our lives are ever going to getting any easier, if we’re ever going to create a world that’s bearable not just for us but for the next generations of autistics, we need to make it so.

As I’ve said above, I also have my struggles, and I’m no spring chicken anymore. I have maybe 20-25 effective years of life left in me, provided my health lasts out, which is not of course a given. I know how long it can take, to effect real change, and I want to make those years count.

Some might say ‘But I don’t know what to do’. The best answer to that is – ask someone who’s already doing it, and who you admire, what you can do. Once you get involved, what needs doing tends to present itself. And we can do it - together.

I say to all of us – it’s time. Time to get involved. The advocates already out there need our assistance, or in some cases even to ‘pass on the torch’. Let’s get out there and change the world.

See you on the front lines…

A Restless Spirit

This is going to be a more personal blog post than I usually do, and I’m uncertain how many others on the spectrum, if anyone, would identify with some of this.

Anyway, what’s been happening for me lately is the return of a perennial problem – a kind of deep-down restlessness. It’s afflicted me many times in the past, from childhood on, but I’ve never figured what it is I really want. I’ve tried assuaging it with this and that, speculated on what it might be from – winter blues, needing to be more creative, meditate more and better, go for a trip somewhere? - but with never any real answers.

I do know, or at least think, that it arises out of a kind of split or duality in my nature, two forces pulling me in totally different directions – and that have also been there my whole life.

On the one hand, is the side of me that likes order, tidiness, regularity, routine, everything fixed in its place, my life lined up like centimetres on a ruler. This side of me, as you might guess, is intrinsically linked to my autism. It’s the force that sees me religiously keep to my daily rituals, tidy my drawers so neatly that my mother once joked “are you sure you’re my daughter?”, and clean so hard it’s a wonder I don’t rub the pattern off things.

It’s also the part that gets flustered if things don’t go according to plan, or if something is out of place, the part that gets upset, or even panicky and close to meltdown, if there are serious disruptions to my routines and order. In recent decades, it’s the force that has driven me towards a semi-reclusive lifestyle, shying away from the world and curling in on my order like a wounded creature crawling into shelter. And in a sense, I was, and am. The world is messy, chaotic and unpredictable, and not nice to autistics. I’ve been damaged, as many autistics have been.

I’d be willing to bet many autistics, by this point, are nodding their heads and going “uh-huh, yep, I so know what you mean!”

But there’s another side to me.

It’s the side that craves stimulation, excitement, variety and yes, even change. That, every now and again, longs to break out of the box I’ve created for myself, this half-life that isn’t really a life at all, grab a few essentials, jump in my car and drive somewhere I’ve never been before, visit towns or even countries I’ve never been to, see sights I’ve always longed to see (Eiffel Tower, anyone? Stonehenge? No?), and do things the orderly side of me would look at in horror.

It’s the side of me that even remotely contemplates a relationship, even if it’s at some distant time in the future – something my other side shies away from like a nervous horse. It’s certainly the side of me that wants to see more of my aspie friends, be more ‘sociable’, have more of a life, in short.

It’s also the force that compels me to write, the side of me that, more and more, wants to grab the world by the throat, yell “listen to me!”, and tell them what it’s really like, being autistic. That wants to shout from the rooftops the truth of my life, and that of others on the spectrum. That wants to go back out into the world as a strong, independent and authentic aspie, and tell the world to Deal With It. Whereas my other side would prefer to stay cowering in my little cocoon of safety, hoping no-one will even notice I’m here.

The tension between these two forces within me is powerful. My orderly side would be quite happy living a near-monastic existence on some remote hilltop or plateau. My excitement-seeking side, however, would prefer the beating heart of a city. Tugged this way and that, by this need and that, I lurch from isolation to interaction and back again. I go away for a few days, enjoy myself, but then gratefully flee back home into my orderly little shelter. (Or should I say shell?) I go to an event, and then come home and crawl into bed for a couple of days. And so on.

At different times in my life, one side or the other has ruled. In my younger years, for example, my more adventurous side pushed me into social movements like feminism and anti-racism, fighting for the principles I believed in. I waved placards, chanted slogans, marched and demonstrated to stop the Springbok tour, defeat sexism, deny nuclear ships a welcome on our shores, return Maori land, and generally demand a better, fairer world. I was an ‘angry young woman’.

But then I started getting sick, and disillusioned, and heartbroken. So the ‘order’ side of me began to assert itself in a slow withdrawal from the world. And since exiting a very toxic relationship nearly twenty years ago, it’s been winning hands down. But now I feel like I’m stagnating… so the other side of me is breaking into flower again.

Overall, it’s definitely time for a weather change in my life. My autism and my CFS do pose limitations, it’s true, as does my sheer lack of funds. (Guess Stonehenge will have to wait a while.) But I do want, somehow, to have more of a life, live more authentically and more vibrantly. Somehow, I have to find a way to do this.

Watch this space.

Discarding What Doesn't Work For Us

One persistent pattern I've noticed over the last few years, is how often and how much the things that work for NTs, do not work for us on the spectrum. Just a few examples of this are: –

1)  My favourite creativity book is ‘The Artist’s Way’, by Julia Cameron. I did its 12-week course years ago, and still refer to it often for inspiration. However one thing she recommends is a weekly ‘artist’s date’, where you take yourself out to somewhere new, as a way to ‘fill the creative well’. This has never worked for me – it just became an extra source of stress, trying to figure out where to go, how to afford it, and perhaps most importantly, going out anywhere, especially when it involves coping with other people and strong sensory input, means my creative well, far from being renewed, is actually muddied and drained. After a few weeks, I just gave up on them, but for years I felt guilty about that.

2) Many aspies have remarked, on Facebook and elsewhere, that regular methods of counselling and psychotherapy “just don’t work for them”, for a whole host of reasons. The only therapy method that seems to work even somewhat for us is Cognitive Behavioural Therapy, or so I’ve heard. For myself, I realised after visiting several counsellors over a period of years that I was better off figuring out myself on my own.

3)  And while I’m talking about psychology, my feeling is that the dictates of ‘pop psychology’ are also irrelevant for aspies. I don’t know how many years I wasted digging into my psyche, trying to find the neuroses others told me I ‘must’ have, as the only possible explanation for my ‘weirdness’. Now I realise my problems and behaviour were largely due to either AS, or the social anxiety that I suffered as a result. I’m not saying we don’t have psychological issues, just that they’re unlikely to be for the ‘usual’ reasons.

4) Many meditation techniques often don’t work for us either – many years ago, I attended a meditation class in Auckland. The teacher told us to ‘just watch your thoughts go by’… and I thought, how stupid! How can you watch your thoughts! This even though I’m a very visual person. I left the class in irritation, and it was many more years before I found the meditation method that works for me.

5) Our reactions to drugs are different to others – I’ve already posted on this elsewhere, so won’t go into further detail on that, but it’s a common phenomenon. Unfortunately, it’s also common that medical staff don’t understand this, and sometimes pressure us to take drugs, or more of them, than we know or sense our bodies are capable of handling, and/or they scorn what we tell them of our reactions.

6) Holidays/vacations – we’re supposed to be ‘refreshed’ and ‘rejuvenated’ by these, but so often we’re not. Instead we come home exhausted, worn-out, and needing a whole heap of quiet time in order to recover from them! Certainly I find the hustle and bustle of a holiday camp or resort horrific, as I suspect do most aspies.

No doubt you can all think of many other examples of the ‘normal’ things not working, or working differently, for you and other autistics. But none of this would be worth mentioning, if it weren’t for the fact that we so often feel guilty or ashamed whenever our reactions or needs differ from others.

Over and over again, I hear this sort of thing from my fellow autistics – “No matter how hard I try, I just can’t do _____”; or “I know I’m supposed to enjoy _____, but the awful truth is I find it horribly stressful”; or even “Is there something wrong with me, that I can’t ____?” We put immense pressure on ourselves to be ‘normal’, to make ourselves over into what we think we ‘should’ be like, or at least to hide that we're not like others, dumping on ourselves for our ‘failures’.

I know (all too well) that after years of being dumped on, yelled at, criticised, and told all the ways in which we ‘don’t measure up’, that it’s totally understandable that we should come to be just as hard on ourselves as others are. But it’s time for all of it to STOP. To stop comparing ourselves badly to NTs (or even other autistics, for that matter). Time to stop being so down on ourselves, to stop flagellating ourselves in our efforts to fit into a mold we were never designed for in the first place. It’s like trying to make a fish run, and then criticising it for not growing legs to do it with - instead of appreciating how beautifully it swims.

Because, when you think about it, why shouldn’t we differ? At the autism conference I attended last month, I listened as a doctor talked of the (at least) 234 genetic ‘loci’ that are involved in autism, and of the many differences between autistic and NT brains – in the white matter, the grey matter, the cerebellum, the cerebral cortex, the brain chemicals, the connections, on and on. So our brains are different, our bodies are different, our thinking runs along different channels, we focus on different things, we have different sensory responses, so why shouldn’t our needs and reactions be different as a consequence? Moreover, why should we squeeze ourselves into the narrow molds of ‘normal’, just to avoid surprising or upsetting – or angering – others? We have the right to simply be what we are, without feeling like a ‘failure’ or punishing ourselves for not fitting the NT mold.

For just about all of us, there’s been way too much focus on the negatives, and not what we can do, and what suits us. I say it’s time – way past time, actually - to stop forcing ourselves into false NT personas, to discard anything and everything that doesn’t work for us, to stop doing what doesn’t suit us (or, if we must do them, to not put on ourselves the expectation of enjoyment or happiness), to let all those things go without guilt or regret, and to assert our right and our need to be our true selves. Because in trying to be ‘normal’, we can only ever be ‘second-rate’ NTs. But if we accept our differences, and live them, we can be wonderfully first-rate autistics.

A Review of the Loud Hands Anthology

I’ve been slowly working my way through the Loud Hands anthology, and I have to say, it’s pretty good. Some might be thinking, of course you would say that, your writing is in it! Well I leave it up to others to judge my writing on its own merits or lack of them, what I want to talk about is the other writings in the book.

There are so many good pieces here, I hardly know where to begin. Jim Sinclair’s historical and ground-breaking piece, ‘Don’t Mourn For Us’ (p13),  forms a good intro - written in the early 1990s, yet it’s just as relevant today. Then there’s his other seminal piece, ‘Why I Dislike “Person-First” Language’ (p152), also from the 90s, and also just as relevant.

There’s also Ari Ne-eman’s retrospective on how ASAN got started (p 66), where he states that one of the reasons for its beginning was that “good intentions and love were quite frankly just not enough… When people that you talk about, or set policy on, or conduct research regarding, are not in the room, even good people feel licensed to say horrible things. You cannot help people through pity and fear.” (My emphasis, as it’s something we should never forget, or let others forget.)

Nick Walker’s ‘Throw Away the Master’s Tools; Liberating Ourselves from the Pathology Paradigm’ (p 156), is a little more ‘academic’ or ‘intellectual’, and some may not like it for that reason, but as someone who came out of the feminist and anti-racism movements in the 80s, ‘the master’s tools’ is a phrase that has great resonance for me. It’s basically about how we need to step out of the dominant mentality, in this case the ‘autism as pathology’ mind-set, and create a new frame of reference, and new language, to describe our reality. Language is power, and changing the language is the way to empowering ourselves. I feel it’s a very important piece of writing.

Julia Bascom’s ‘Quiet Hands’ (p 119) is another important piece – even though I’ve read it before on her blog, it still gets me every time. Her ‘This is Why’ (p 134) also moved me to tears, as did Amanda Forest Vivian’s ‘They Hate You. Yes, You” (p 124). They also left me feeling angry and anguished about what’s been done to us, what’s still being done to us, as did Julia’s ‘Grabbers’ (p 137), and Shain Neumeier’s ‘Inhumane Beyond All Reason’, on the terrible things done to autistics and other ‘different’ people at the Judge Rotenberg Center. There’s so much out there that needs changing, and Zoe Gross’s ‘Killing Words’ (p 163), is a potent and chilling reminder of why we need to change things.

The most important thing about this book, however, is not so much the individual pieces, fine as they are, but what the whole book represents. Most autism books I’ve seen or heard of so far are either autobiographies by autistic people, books for parents of autistic children, or ‘self-help’ books for autistic people, often by those who are on the spectrum themselves. There’s nothing wrong with any of these, but I do feel Loud Hands goes a step further than all of them. More obviously ‘political’, It collects and collates important existing advocacy pieces, brings in new ones, and presents a vision of where we are, where we’ve been, and where we are going. It’s a new type of writing ‘about’ autism, one which has been slowly nurtured in blogs and social media groups and forums for quite a few years now, but this is the first time it’s all been put into a book, and published, and put ‘out there’ for all to read, and in doing so, it makes a powerful statement about us.

I believe that this book is our ‘Declaration of Independence’, our Communist Manifesto, our Long March, our October Revolution, our Stonewall Riot, our Our Right to Love, our The Female Eunuch, our ‘burning’ of bras (actually just publicly dumped in a trash can at a protest outside a beauty contest, but the media has never let feminists forget it), our Sisterhood is Powerful, and any other powerful event or book or document of liberation or explosion of collective frustration that you can name, that started some ball rolling, outlined some group or movement or country’s priorities, allowed one oppressed group or nation or another to redefine themselves, and get, or begin to get, their oppressor’s foot off their neck. I believe that some day Jim, Julia, Zoe, Amanda, Nick, Ari, et al, will be seen as our George Washington and Founding Fathers, our Martin Luther King and Malcolm X and Audre Lorde, our Shulamith Firestone and Robin Morgan and Germaine Greer, our Susan B. Anthony and Kate Sheppard and Pankhurst sisters, our Gandhi and Steve Biko, our Harvey Milk and, well, anyone else you can think of that did so much for their people, their brothers and sisters, their race or gender or sexuality or nation.

It’s that important. Read it.

We Are No-one's Responsibility

We autistics fall through the cracks, when it comes to ‘The System’. We are no-one’s responsibility, there is no agency charged with our care, no Autism Minister in Cabinet, no Department for Autism, no anything – in any country in the world, as far as I am aware (if I am wrong, please correct me!).

To some extent, this is because of our ‘newness’ to the scene, and our not fitting into existing categories whose care has long been the province of one government department or another. Those with mental health problems, for instance, have for centuries been taken care of by various institutions, and more recently by mental health agencies – whether or not the care has been the best is debatable, but nonetheless it has been there, from the days of ‘Bedlam’ (Bethlehem Insane Asylum) onwards.

In much the same way, those with neurological problems, whether genetic (eg Parkinson’s), age-related (eg Alzheimer’s) or acquired (eg brain injury), are the province of scientists and doctors specialising in their conditions, and also (in NZ) the Neurological Foundation. Those with physical disabilities are taken care of by various Disability or Health agencies, as well as in many cases also having well-established associations or foundations, all of which function within the ‘mainstream’ of society, and excite little or no controversy.

We don’t have this. But we nonetheless have our needs, and so there’s a gap[1]. And in this gap two things have flourished –

1) The parent-led autism groups, which range from the reasonably good to the absolutely diabolical. Not naming any names, but we all know who the latter are!

2) The ‘autism industry’, ie all the ‘quacks’, hucksters, ‘cure-peddlers’, scare-mongers and parent-fleecers, basically anyone who is trying to make a buck out of scared and overwhelmed parents.

For the most part, neither of these two groups (as we adults on the spectrum know all too well) want to listen to autistics, or let us participate in any but a token way, or meet our real needs, or even just rethink their stance on autism.

So whose responsibility should we be? Who should take care of us, meet our real needs, advocate for us, make submissions to parliament, etc, etc, for us?

There can be only one answer. We will have to do it for ourselves. There is no-one else that can do the job, no-one with the willingness or the depth of understanding of our needs and viewpoints, no-one else who has the mandate to express our views and agitate or advocate for us.

Yes, I know that it is hard. Very hard. I know that we all have our battles, and that many of us are barely getting by, struggling to stave off job loss or homelessness or daily sensory stress or breakdown of relationships or the hostility of those around them. I know how hard our lives can be, oh how I know!

But we have to do it nonetheless. We really don’t have a choice, given the state of our lives. We need to organise ourselves, formulate our agendas, define our most pressing problems, and make our voices heard – through whatever medium, and in as many ways as possible. Our lives are shitty precisely because we have no voice, our needs are not catered for, we are grossly misunderstood, etc. Anything and everything we do to try to change that has to have a cumulative effect – a bit like chipping away at a brick wall – eventually, it will start to crumble, and then collapse. The wall is our own personal Berlin Wall, behind which we are trapped and silenced, and it’s time for it to come down.

How we go about it will naturally largely depend on the abilities, inclinations and resources of both the individuals and the groups they form. Some of us would be good at, say, writing letters to the Editor of a magazine or newspaper, or writing books, or creating photos, paintings, posters or even movies that will raise public awareness. Others will want to tackle petitions or submissions to government, or public speaking, or research. Or liaise with the media, maybe even convince them to do a ‘TV special’ on us. Yet others will prefer to help in other ways – making banners or placards, raising funds, offering a bed or a meal to advocates/activists from out of town, or organising transport to get to a meeting or presentation. Some will simply get up the courage to speak up and challenge the ignorance of those around them, or to ask for accommodations at work, or for their autistic students or patients. There are many, many ways we can take part, no matter what our circumstances, or level of ‘functioning’. We need to just start from where we are, and see how our role develops. But be assured, we all have one.

Autism ‘Awareness’ Day is coming up in April – I suggest we use that as an opportunity to do something, however small, that will help our cause. That is my challenge to all of you – and I include myself in that too, of course. I would love it if 2013 was the beginning of real change in our lives, both individually and collectively. I know we can do it.

Maybe someday, there will be ‘Ministers for Autism’, government departments whose charge we are, agencies that can truly help us, truly meet our needs. Maybe. But until that day comes (and I’m not holding my breath waiting, given the current economic climate), we are on our own, and we have to do it for ourselves – and for the future generation of autistics coming along behind us.

Be strong, my friends.

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[1] In some countries, or parts of countries, we get some, usually grudging, partial support from disability agencies or government departments, which we are often clinging on to by our worn-down fingernails. But on the whole, they don’t really know much about us, or want to, or want to properly cater to us. Some doctors, scientists, psychologists, etc, are doing research on us, but as most of this study takes the ‘pathological’ bias as its starting point (ie they start by assuming our way of being is ‘wrong’, and the NT way ‘right’), it tends to just fuel the autism industry.

We Are The Last Group That Will Be Liberated

We are the last group that will be liberated. The last ones that will have their oppression lifted, their plight seen for the travesty of justice it is, their status as fully equal human beings asserted. The last two centuries have seen just about every other group or minority move out from ‘sub-human’ status and into being redefined as within the range of ‘normal’ or ‘acceptable’. Now it must be our turn.

Once upon a time, the ‘norm’ was defined, at least in the Western world, as white, male, middle-class, heterosexual and of course sane, able-bodied and of normal intelligence. The attributes of this group were the standard against which all others were measured, the yardstick ‘everyone’ should ‘naturally’ aspire to, the best that any human could be. And if you weren’t all of these, you were somehow inferior. To a large degree this wasn’t even discussed, but simply assumed. It was the ideal pattern, the superior state, and that was that. In English-speaking countries, you could add ‘Protestant, of Northern European, preferably English, ancestry’ to that list, or, as the Americans call it, a ‘WASP’.

And then the challenges started. Women got uppity, demanding the vote and a decent education and all the rest. The lower classes formed unions and agitated for change and ‘one man, one vote’. Even ‘coloured’ people, once the shackles of slavery had been removed, began to slowly organise and strive for something better for themselves. And as the twentieth century moved on, the agitation only increased. Socialists came to power in some countries, or formed Labour Parties and got into Parliament in others. Formerly subject peoples threw off their colonial masters, and began to govern themselves. Those ‘coloured’ people started calling themselves Black, or African-American, and refused to sit in the back of the bus and accept second-class citizenship anymore. Women soon followed their example, for a second round of ‘uppity’ behaviour, and in the late sixties gays and lesbians began their own revolution.

The result is that over the last thirty to forty years, there has been a change in how such groups are regarded, with a consequent change to the common idea of the human ‘norm’. Publicly ‘out’ gay figures, mothers working full-time, women and dark-skinned people in prominent and powerful positions - even President of the US - are no longer seen as unusual or something to automatically reject even the idea of. In New Zealand we have gay civil unions, and have had two female Prime Ministers, one female Governor-General and two who are of non-white ancestry. And the sky hasn’t fallen yet.

And along with all this, there have been changes for other formerly powerless groups. Patients now have the right to be consulted and to choose their health care, where once they were simply passive recipients of ‘treatment’ from the Doctor Gods On High. Mental health patients have undergone a similar empowerment. The blind, the deaf and the intellectually handicapped, once powerless and marginalised into institutions, now enjoy a much better position and quality of life. The physically handicapped have also acquired ‘rights’, to accommodations such as disabled toilets and to being seen as fully human, even if in practise they are sometimes still treated as ‘not all there’. Nonetheless, it’s seen as ‘not nice’ to refer to ‘crips’, to laugh at someone because they can’t walk properly, or to talk down to/ignore someone just because they’re in a wheelchair – any more than it’s socially acceptable in most circles to call non-whites ‘niggers’, ‘chinks’ or ‘wops’, or to tell women they can’t do a particular job just because they’re female, or to say that lower-class or Black American accents are not acceptable on mainstream television.

That’s not to say that racism, sexism, homophobia, classism or even ableism, have all been eliminated. Far from it. But my point is that the idea of what constitutes the ‘norm’ has changed. All these groups are now seen as having fully human status, as being worthy of being treated well, even if they sometimes aren’t.

We are not.

It’s still okay for people to say in our hearing that we are ‘mistakes’ that should never have been born, or ‘thieves’ that have stolen away people’s ‘real’ children, or tragedies and burdens that have destroyed our parents’ lives.

It’s still okay – even commended – for people to say in our hearing that they ‘hate’ the autism that is the very core of who we are, without regard to the psychological damage that might do us.

It’s still okay for media to portray us almost entirely in a negative, patronising or pitying light, and to report unopposed the views of those who say that murdering us is ‘understandable’ and a ‘mercy killing’.

It’s still okay to force us into ‘treatments’, therapies or ‘restraints’ that can do us real harm, while denying us the support that actually could help us.

It’s still okay to refer to us as ‘retards’, ‘losers’, ‘geeks’, ‘nerds’ or ‘ass-burgers’.

it’s still okay to exclude us, reject us, laugh and jeer at us, bully us even as adults, deny us employment, and generally dis-empower us.

It’s still okay to demand that we suppress and deny our true selves and natural behaviours such as stims, even if they aren’t hurting ourselves or anyone else.

And it’s still okay to take it as a given that our ways of being are automatically inferior to those of neurotypical ways, and any difference between us is a ‘defect’ on our part.

Most of all, it’s still okay to see us as ‘not fully human’, as somehow lesser than the ‘normal’ people, as Not Good Enough to have rights just like any other human.

Because we are not seen as fully human, and we have no rights.

I’m not wanting to minimise any group’s struggle here, but it’s nonetheless true that even the blind, deaf, intellectually and physically handicapped, and those with mental health issues, are seen as more ‘normal’ than us. Unless they are also on the spectrum, there’s a shared outlook, a body of shared assumptions and attitudes, a natural facility with all the things we so struggle with, that they all have in common.

We don’t share it.

We are the ultimate ‘other’. The furthest ‘out there’ group, the last frontier of what it means to be human. Having spent time in the feminist and anti-racism movements of the eighties,  I believe our struggle will prove to be the hardest, the longest, the loneliest and the most complex of all.

None of which means we shouldn’t try – rather, it means it becomes all the more imperative, all the more needed, all the more necessary, that we do. And when we consider all the above treatments we are on the receiving end of, and the damage they are doing, all the more urgent. We have to do it. We have no choice. Because we are human, and it’s time to step forth and declare it, and take our place in the world.