“You know, Charles, I used to think it was going to be you and me against the world,” Mystique says. “But no matter how bad the world gets, you don’t want to be against it, do you? You want to be a part of it.” Take out a few words here and there (primarily from the start), and you have the essence of what I sent in a text message to my mother whilst I was unable to sleep a handful of nights ago.
When you are nearing your mid-thirties and are still tearfully, fearfully begging family to help you gain some manner in which you can make do in the society that excludes you, something has gone horribly wrong. I know how pathetic this sounds. And how pathetic it sounds is why I maintain, and will continue to maintain until the day I die, that having parental units like mine is most emphatically not preferable to having parental units that are physically abusive in a manner that the police can easily document or having no parental units at all. Ever since I was told “you are autistic”, they have been engaged in a game of batting a ball back and forth between underfunded social services and themselves as to who needs to step up to the plate and help. And this has cost me what little was left of my youth. The only language that even begins to approximate what I think or feel concerning that is Latin. It is not a coincidence that Latin is the language I chose to be a proxy for Dwarvish.
But the thing is, in a situation where people are abusing an individual who has limited or no means to fight back, you can be one of two things. There is no room betwixt these. You are either a defender or advocate of the abused individual’s rights, or you are a collaborator and accomplice to the abusers. It really is that simple. By sitting there and pissing and moaning to the abused’s face that there is nobody there to help them, and not doing anything to help correct that, you are effectively abusing them.
Hence, if/when there comes a day when I am standing in front of a camera and telling the world that the next time I hear of an autistic child being murdered, I will string their killer up by the testicles with barbed wire, these people will have nobody to blame but themselves.
It is already too late for both of my parental units. A few months ago, I might have tried to make my mother understand. To make her see that unless there is a change in her strategy concerning how she deals with me, bad things are going to happen. I have also reminded her of the fact that during my time in what I will call Cuntborough going forward, every anniversary of my birth was preceded by an enthusiastic but ill-conceived suicide attempt. My approach, I realise now, was flawed in the fact that I failed to put adequate distance between myself and her, and that I relied on a singular chemical agent (namely rapid-acting insulin, one where the active molecule is called insulin lispro). I also pointed out to her that the conditions for these acts to begin again, namely being unable to live like a Human being, being unable to access needed things, and being treated like a zero-class citizen, were exactly right for me to start doing this again.
I want to reiterate this fact. Stories about autistic individuals, or disabled individuals, finding themselves being ignored or flat-out told to go and fukk themselves by society then either going and creating something to fill the void, or having family do so on their behalf, are legion. I read them every day on such places as the Every Australian Counts Fudgebook page, and rather than make me want to pat those organisers on the back, they make me angry. Livid, in fact. Livid that whilst these clown organisations go out of their way to court the papers and do the publicity circuit, they seem to have given exactly zero thought to such things as organising to provide alternatives along the lines of what they want.
In order to illustrate what I mean, I will talk about some fictional examples of informal Human networks through which wealth and services are distributed. In Mario Puzo‘s novel The Godfather, whilst Vito Corleone’s reputation is based a lot on his violent conflicts with other mob bosses, the people in the places he controls love him because he helps them through the exchange of favours. The best example of this comes early in the formation of his informal empire, when an elderly lady is being kicked out of the apartment she dwells in because she refuses to get rid of a pet dog in order to stay. Taking up her case, Vito basically asks the landlord to let the lady stay, and to keep her pet, giving very subtle hints that whilst this landlord has something to gain by granting this one favour, they also have a lot to lose by refusing. This subtle, gentle hinting is a hallmark of Vito Corleone’s informal rule of his segment of New York. But the salient point here is that through this and other means, Vito essentially establishes a proxy welfare system for people he considers to be part of his social group.
Whether we like it or not, when our governments let us down as badly as Australia’s has let down disabled (or working class, or middle class, or…) individuals of all stripes, building a network of our own to replace the one that should be there for us should be considered a priority. Yes, that takes money, and yes, that takes time, but the longer we put off building it, the longer Nazis like Autism Speaks will be able to project their hateful, shameful-disabled image upon us. And I do not know why this is not increasingly apparent to others on the spectrum, but we cannot go to governments and expect them to pay our rights any regard.
Not because these governments are particularly fascist or totalitarian (although they are moving alarmingly in such a direction, but that is a subject for another time). No, the problem is that they are part of the problem. Think of it this way. Let us use the Aborigines in Australia as an example. Regardless of what you might think of what they do in their own communities, the reason that the government of Australia has proven so painfully slow at recognising their rights is not for lack of assertion. No, the problem is that as far as I have seen during my lifetime, they have made their case from a position of weakness.
In essence, the Australian Aboriginal case for laws equalising their rights has amounted to “give us, please”. But imagine for a second if someone amongst them who found some sort of success in their work began using that to build their own informal system where the strengths of the Aboriginal community are pooled. That would mean the case would go from “give us, please” to “if you will not let us have this, we shall build it for ourselves, and maybe hit you over the head with it down the line”. And this is not just a matter of land rights (which is a stupid thing to argue over for reasons I will detail elsewhere). It is a matter of reversing numerous kinds of discrimination.
Whilst the details differ from group to group, the basic foundation remains the same with all disenfranchised groups. Including the autistic. And this is the revelation I have had after years of trying to plead with my family for aid. You see, when your male parental unit could not care less what happens to you as long as it does not inconvenience him, you have to strike at him from a position of power and force.
This, sadly, puts me in a very unfortunate position. You see, merely declaring that I will not speak to him again so long as he is alive is not going to do anything. He expects me to come crawling back to him. But when I tell my mother that I am going to a) disappear from where anyone can find me and b) use a mix of chemicals to end my life, this has unpleasant repercussions for him. It makes it harder for him to get along with her, and it makes it harder for her to live with how he is determined to do the absolute minimum it takes to convince her he is even trying, regardless of the consequences to me. So once again, after years of attempting to be nice, and ask nicely, I am again forced to act violently toward them. And this is the unpleasant truth of the matter. Asking nicely only gets you things in small groups, or on a person to person basis (and sometimes, as proven by the preceding example, not even then).
Actually, fukk it, I am going to explain something about the rights to land as they apply in the real world here. You see, in the real world, not the idealised world that the hippies think they live in, a person’s claim to any piece of property has only as much meaning as it has force with which to back it up. This includes houses, the contents therein, and the land it is on. Dislike this? Well, tough.
Are there situations in which being nice, or being gentle, avail us anything? Sure. In fact, many of the situations in which we interact with small groups of other Human beings require this. On a one-to-one level, how we act with others determines how they react to us. The problem, at least from my point of view, is that people tend to have a very self-centric view of who is doing the acting and reacting. I will give you an example, show you what I mean.
Yesterday morning at around 1100 hours, I was telephoned by a member of a local mental health service organisation. When I anxiously, half-asleepedly (no, that is not really a word) answered, the member in question wasted no time in making me feel anxious to a point where it wrote off my entire day and doubtless made me horrid to speak to. So let me give you a little advice for the future, mental health workers of the entire world. When you open a conversation with me, never tell me how “concerned” or anything along that line someone is. I do not care. Because thanks to despicable behaviour on the part of people in your line of work, just that word on its own has terrible secondary implications to me. It sends me warning signals that the person I am talking to has expectations along the lines of “talk right, spit my feeble little mind back at me, or I will send the cops to drag you away and do things to hurt you”. And if you are thinking of telling me I am being overly dramatic, do not. Every visit spanning more than a couple of hours to any hospital in Queensland has sent my blood glucose going in one direction: up. This, in itself, is not so bad. After all, in order for a living creature’s blood glucose to remain static, they would basically need to be dead.
But the thing is, when your patient’s blood glucose tests are coming back in excess of 20.0 mmol/l, it means they are already in quite some discomfort. It means you do not delay bringing them the medication they need to bring it down, and you sure as fukk do not try to discourage them from using their own if they have it. And on top of that, when your patient weighs in excess of a hundred kilograms in spite of being only five-foot-eight and change, the dosage must at the very least match the whole numbers in the blood glucose reading. 24.2 mmol/l means 24 units at minimum. Otherwise, you basically end up with a patient who is feeling sicker than some chemotherapy patients report feeling after they have endured a good round of chemical agents.
Can you even imagine how incredibly aggravating it feels to be in the presence of medical professionals who seem to want to insist that they know better than you how to treat a medical condition you have lived with for nearly a quarter of a century? Or how aggravating it feels when they use that belief to justify keeping you in a state where not only does every bone in your body feel like it is rusting, but it feels as if your mouth is filling itself up with baby dragon shit? After five minutes of trying to tell them I need to get my blood sugar down as fast as I can and start doing so right now to no avail, I want to punch their fukking lights out.
Yes, I feel very violently towards a lot of people. Given my feelings, and the manners above in which Queenslanders aggravate them, I think I deserve recognition for managing to not kill one of them during my time here.
But this is all just dressings and decorations for my main point here. The fact is that for a couple of months, until very recently, I have been feeling so disillusioned with my mother that I simply gave up and decided that I had nobody in the world at all. Hence the quotation at the start of this piece. Because there are some people who, no matter how bad the society or place they are in gets, want to be a part of it.
So what we basically have at the end of all this is the unpleasant realisation that my relationship with both of my parental units is like a gangrenous limb. I can try to save it to my heart’s content, but it is dead, and all I am doing is wasting a lot of effort. I want my mother to have a happier, better life. After everything that our world has done to shit on her, she deserves that much. Sure, deserve has little to do with it, but that does not mean you can begrudge me for asking on her behalf. And I feel that means that not only should I be excising her (and more importantly, my male parental unit) from my life, it more importantly also means that I should be excising myself from hers. Maybe doing this irrevocably is the way to go, I do not know anymore. The extent to which I am tired of beating my head against a wall cannot be described in words. But what I can tell you is that in a society like Queensland, where nobody seems to pay even the slightest mind to the suffering of anyone outside of their very limited Monkeysphere (think <7 people), there is no hope of ever getting anything positive done.
And that, friends and neighbours, is how life, supposedly the most precious thing a beautiful youg lady can give, turns into a curse.
I Still Find It So Hard... 