The Right to Life

This is long, rambling and dark but I make no aplologies for that. It’s the first real thing I’ve written in a while and I really needed to get it out of my head. I imagine I’ve written some things which some people might not agree with but that doesn’t matter, how you feel is how you feel. Besides I’m tired of other people telling me how I should feel about myself, they have the right to disagree with my view of things but not to dictate how I should feel about all of this.

Many of these thoughts were in my head even before I knew about those comments related to “low functioning” autistic people and how they shouldn’t be allowed to be born, how only “high functioning” people invent stuff and are of use to society. That’s not exactly what I was thinking but it’s certainly the same kind of theme. I don’t want this to be a rant about that because that’s not what I need to get across right now.

I’ve been trying to work out what the problem is (practical concerns aside) and I rightly came to the conclusion that I was letting certain things get into my head and that was a large part of the problem. What I didn’t know was precisely what I’d let get to me. I think I know now, it’s the idea that I’m unworthy of life and that I don’t have the right to live as long as I’m of no economic or social value. Where such thoughts came from is probably not one thing but two, both the current political climate and everything I know about the Nazis. Plus the idea that such attitudes and thoughts are still around even seventy years after WW2. Jewish people no longer have to fear pogroms and death camps and disabled people don’t have to fear concentration camps or being gassed to death in a so called hospital. But for both groups of people in some ways little has changed. Jews are still treated with suspicion in some quarters and certain myths like their control over certain industries dominate even today. As for disabled people I question how far society has come, especially in regards to autism and things like learning disabilities and other neurological issues.

How can you feel like any progress has been made when you read complaints about such people being in mainstream school alongside “normal” children yet the same people bemoan the cost of units and special schools. As well as making comments about how it’s not fair “special children” get so many extras like trips, experiences their kids don’t get and what they deem to be unnecessary extras and special treatment like adjustments in exams and other such things. What their problems are is clear to see. They don’t want those people contaminating their precious children and they don’t want to pay for them either. Which leads to the logic of such people shouldn’t exist, not children and not adults. Education for them is too expensive and that logic leads to life for them is too expensive for the rest of us. That disabled people are an expensive and bothersome cross they have to bear who have less of a right to life than so called normal and healthy people.

I let all of this get in my head, though in truth I feel like it just awakened thoughts and feelings which were already there rather than actually putting them there. I didn’t think too much of myself to start with so I wasn’t very resilient in terms of resisting such thoughts. And all of this lead me to the conclusion that death is the only option. That not only does my life have no meaning to society or any economic value but that it has no value to me either. I started to feel like I didn’t have the right to feel anything good or to have anything at all.

And soon enough there wasn’t anything good to feel anyway. Things which once made me happy no longer did so. Instead they were somehow tainted, instead of seeing things like a good match to watch as something which made me happy all I could think was how pointless it was and how I didn’t deserve to enjoy it. And other times I felt nothing at all, not happy, not sad, just nothing – a complete blank.

There’s one more aspect to all of this I’ve found confusing as well, just as confusing as feeling nothing is feeling everything. It goes from one extreme to the other. From being a complete blank to feeling everything at once and finding it overwhelming. At one extreme you want to do nothing, you feel like you can’t do anything and so you don’t. It takes so much effort just to get out of bed it feels like doing anything more is just impossible. That quote from the Enke book is certainly accurate. The gist of it being in the morning you feel like you can’t do anything and so you don’t. Then in the evening you beat yourself up for not having done anything.

And if you try to do anything and fail or it doesn’t go to plan you end up feeling even worse. But even if nothing goes wrong you still don’t feel right. You might find an obsession related task to busy yourself with but it doesn’t bring you the same joy it usually does. That’s assuming of course you even get that far because most days you don’t. Even just writing about it starts to suck you down into the darkness and to feel like everything is pointless. Now it’s taken me away from my point, which was about going from one extreme to the other.

Maybe the reason it’s so hard to write about it is because there hasn’t been many days like that lately, more of them have been dark ones than anything else. On days like that you feel like you can and want to do everything. You have plenty of ideas in your head and want to write (or type in my case) them down all at once. For a while you feel unbeatable, almost like you’re flying, as if nothing can take you down. It used to happen when I stayed up all night but I haven’t been doing a lot of that lately, at least not by choice anyway. Rather than late nights writing or watching football they’ve been nights spent awake worrying. I hate even thinking that I cried myself to sleep let alone admitting it. I know emotions aren’t a sign of weakness and all that but I still hate it. And now I’m doing it again, writing about the opposite of what I’m actually meant to be writing about.

It’s not so much I haven’t felt like that in a while but that when I do it doesn’t last as long. There hasn’t been many late night flights of fancy or genius story ideas lately. In fact the best idea I’ve had is one borne of the darkness, that idea being Matze trying to kill himself and the story which details the aftermath of that.

I guess I just feel like I can’t win these days, if I write I’m both happy and unhappy. And it’s much the same way if I don’t write and for everything else really. Everything just feels wrong. When I can think it’s like I’m all over the place, like I can’t pick one topic to focus my mind on which is unusual. The constant chatter in my head drives me crazy, a lot of is completely random and just makes no sense whatsoever. It’s even worse when the same thoughts keep coming back again and again, and they just won’t go away. Even when they’re not bad thoughts it’s still annoying.

But none of that is what makes me angriest, it’s my inability to act which does that. I’ve thought all of this through, I know what the options are. Yet I can’t seem to act upon any of them. If I can’t find anything in life worth being alive for then death is the logical conclusion, it’s certainly the only way out of the confusion and torment. So why then can’t I act on it? And I know this is a stupid thing to worry about but I can’t help but think if I talk to anyone about this they’ll take the fact I haven’t attempted to act on my thoughts as evidence that it’s not that bad. Or that I’ll be told to simply pull myself together and stop being so pathetic. The other thing I think might happen is to be told you know suicide is the logical solution to the situation, not only that you’re right your life is pathetic and meaningless and you’d be doing everyone (including yourself) a favour if you did do it. Part of me almost wants to hear that because I want to see if it pushes me over the edge into actually doing it.

I feel like the only reason I’m still alive is because I’m too cowardly to commit to dying or anything else for that matter.  But if I am indeed too cowardly then I need to find a way to make life more bearable, if that’s at all possible. I think I’ve avoided seeking help for far too long, making excuses to myself and finding reasons not to. Plus I haven’t had that many great experiences with so called professionals which makes attempting to seek help seem like a valid option. Memories like that stick, autistic or not. And it’s hard to put your trust in someone after an experience like that.

Even if that weren’t an issue the problem of me finding it hard to actually tell someone what’s bothering me is still there. If only I could have written it down and they would agree to read it then it would be less of an issue. One doctor refused to read it, insisting I read it out and verbally tell him (which kind of defeats the purpose of writing it down). And since then I’ve not really felt confident enough to try again. It wasn’t even my idea to start with yet I’m the one feeling stupid over it. That’s exactly part of the problem, that happened at least four years ago yet I’m still angry over it.

So if death isn’t an option (at least not until I summon up the courage or run out of options) then I need to deal with some of these problems. I’m not optimistic on that count, it’s not like anything or anyone has been helpful before. And lest I get told I need to help myself I damn well know that, but there’s only so much you can do. But I have to try at least, if not just to cross this off the list before admitting defeat and giving up.

It all comes down to this, I’m tired of being afraid of everything. Forget about doing anything  in life, when you’re afraid like that you can’t even live day to day. I’m tired of being afraid to step outside or be anywhere where other people are. Or where unpredictability is a factor to deal with. It would be nice to just go outside without being on the edge all the time, and the same for being around other people too. It’s exhausting thinking over every single word I say and every little thing that happens. I never feel at ease around other people, even people I know and it makes me not want to be around other people at all.

But I keep getting told I can’t spend my life hiding away in my room, yet no-one has any words of wisdom as to how I’m meant to deal with the outside world either. So I don’t know where that leaves me. All I can say is it’s easy for them to preach to me about what I should be doing but they don’t actually have to do it, they don’t have to live like this. I’m tired of people and their expectations. I’m tired of them thinking they have a right to have any expectations of me and to be disappointed in me.

People say do what makes you happy but when they hear what that is they soon change their tune. And I’m not talking about death either, though obviously they say that when that’s my answer too. I mean when my answer is to retreat from the real world, to hide away with my stories, football and films. To collect stickers and cards, and engage in similarly repetitive activities. No-one ever believes me when I say I’d like a job which consists of repetitive tasks and little social contact and I don’t know why. It makes me wonder if they even know me at all. If they’ve fallen for the act I put on around other people. I mean  I know I can’t pass for normal but maybe I do too good a job of getting too close to being normal. So it surprises them when they learn that I like to engage in the same kind of activities my more visibly autistic brother likes to do. Maybe they’ve made the big autism mistake, thinking that because a person is highly verbal at times and intellectually normal they aren’t that autistic. I guess on that count it’s a good thing they don’t know how I act when I’m alone, it might make them most uncomfortable. So I don’t really know what the solution is to that problem. For the moment thinking of such big problems isn’t what I need to be doing. I need to work out what’s most important, to work out the things I can do something about.

I want to not be afraid, or quite so afraid anyway. To stop feeling like everything is pointless and not think of death. To be able to feel something good again, to be able to enjoy something. And for the feelings to last. To stop questioning whether or not I have the right to be alive and not think about how the government could round us all up and put us in camps if they wanted to. I don’t need to be happy, I don’t need to think that big. Just the absence of some of the negatives would be a start. After all I’m used to having to keep my expectations low.

As far as making any real plans go it seems pointless, it feels too big. I don’t whether that’s because I can’t see the point in anything or it’s because the future is like this abstract concept I can’t quite grasp. I know that’s an issue for me, if something’s not happening right now then it’s like it isn’t real to me. But I don’t know which one of them is responsible, or maybe it’s both of them,

The strange thing is as I was typing up this last part of this there was a documentary on entitled “Unravelled: Countdown to Kill.” That particular episode was a about a man named Chris who had Aspergers. He was a genius mathematician but couldn’t hold down a job or really fit in anywhere. As a result of his depression he developed psychosis and wrote an email to his father blaming him for giving him Aspergers and demanded he apologise for that and for reproducing when he had defective genes. When that email went ignored and unanswered he ended up devising his own final solution.

What freaked me out about that is the fact I ranted (in my head to myself) about a similar topic the previous night. I was angry about that too, about people knowing they had defective genes and yet going on to have children knowing they could end up like them. It made me angry to think of knowingly inflicting this on a child. I know what people will say, it’s only Aspergers and not some horrible genetic disease which will certainly result in death. And that’s kind of the point, at least if you have a disease you have an idea of your fate and you get a way out. You don’t get that with Aspergers. There’s only a way out if you take it yourself.

The thing that bothered me the most is the family friend saying she couldn’t understand why Chris was so angry and why he blamed his father. How can they not understand? He’s a grown man who can’t hold down a job, has no friends, no life, and can’t do the one thing he loves the most. The question you should be asking is how is he still alive? Why has he in his anger not hurt himself or someone else sooner? The way people like him are treated in society is it any reason why so many end up killing themselves? They get socially isolated because let’s face it normal people’s talk of tolerance and acceptance is just that, talk, most people don’t practice it. Normal people do nothing to help autistic people, despite autistic people having the disability it’s we who are expected to do all the work.

In the documentary the focus is on him and his failings, all the professionals agreeing that if he had sought help none of that would have happened. That it was his fault, that he chose to commit a violent act instead of getting help. That if he had only sought help everything would have been ok. That he would have worked through his problems, found a job he loved, found the love of his life and bought a home like every good American should. Again he’s the one with the disability. Why is it his fault for not reaching out? How about blaming his father for not reaching out to him? And they are absurdly naive to think all that would have happened. It hadn’t happened so far so why should it happen at all? As long as the focus is on the disabled person and what they’re doing wrong society isn’t going to get it. He was psychotic, he didn’t chose to do anything, he was sick. He was beyond being able to make a rational decision.

None of the people they talked to addressed the failing of society in finding a place for such people. But then that involve them reflecting upon their own behaviour and how they treat such people. It would require them to change their own behaviour and they would not like that. He was a smart guy, super smart. He could have been of huge value to society. Yet all people saw was a strange guy who they didn’t like. And the focus was always placed on him changing his behaviour, never on people accepting him for who he was. And they wonder why he hated himself so much he started thinking eugenics was a good idea. All the time they’ve been putting those thoughts in his head, making him feel like there’s something defective about him by always sending him the message he needs to change his behaviour. Society sends you those messages from every angle all the time and then people act all surprise when you express feelings of self hatred.

How his so called friends treated him shows that normal people don’t care about disabled people. Instead of talking to him about his behaviour or getting advice from someone they simply moved out without telling him. When normal people do things like that it’s hard to tell yourself it’s worth making the effort to build relationships with them. His father’s girlfriend was horrible too. She didn’t like them living with him. Like her opinion mattered, his mother died for god’s sake, how about some compassion? You start a relationship with someone who already has a child you don’t get to dictate how they raise their child, and if they have a problem with that child living in his own home that is their problem. God even I understand that. See this is what I mean, normal people like to say they are so empathetic and autistic people lack empathy and compassion but the truth is they do.

I guess the question I need to answer is do I hate myself because it’s the way I feel, because I’m a disappointment to myself – or is it because I can’t live up to other people’s expectations. I feel like I’m pretending for their sake and I don’t like it. As if they only know the person I’m pretending to be and not the real me. I think I’m happy when I hang out with people but I’m not really sure. And I’m not sure if that doubt is just because of my anxiety around social situations or it’s because I really don’t enjoy them. I wonder if I could be less anxious maybe I would find them less exhausting too. Or maybe that’s just wishful thinking.

I don’t know which one is the real me, or if they both are. I feel happier (not to mention safer) when I’m in my room alone, when I don’t have to worry about looking normal, the only noise is what I want to be there, I’m in complete control of my environment, there’s no element of unpredictability and everything is calm and quiet. In other words when I’m less stressed out. Every time I go out or spend time with other people I always regret it. I feel so tired and beaten down afterwards I question the value of doing such things, of whether or not any potential good which comes from it is worth it. When I’m alone in my room I can easily forget about the outside world and were it not for the cinema I’d have no reason to go out. Lost in my stories the outside world doesn’t even matter.

I always feel like I’m pretending around other people, even people I know. And I hate that, I hate the feeling I can’t be myself.  To be around other people you have to pretend to be something you aren’t. Spend all your time alone and you don’t have to do that. I don’t know, I really don’t. I often think of not doing that anymore, of wasting no more energy on keeping up any such pretence. I hate it when anyone tells me how excited or happy I look and sound because I don’t feel it. I don’t even know why I’m smiling. Sometimes I want to scream not only at them but myself. I’m frustrated with myself for the way I keep pretending I’m fine. I wish I could just tell one person in real life the truth. That I could show my feelings in front of them and tell them I’m angry, confused and scared. But I never do that, only during a meltdown do I let other people see me upset and that’s probably because I’m not thinking straight.

Even more I wish I could tell them I’m angry at them for saying how smart I am. Because I don’t feel smart and they are part of the reason. I feel so stupid when I can’t understand what they’re saying and I can’t tell them that’s the case. Too many words and I get lost, half the time I don’t even understand what I’m saying let alone someone else. Part of me wishes I never had to talk out loud again, not to anyone. It’s not the only reason I’m angry with them. I’m also angry because they say one thing and do another, they say things they don’t mean and don’t stick to agreements. Life is confusing enough without so called friends making it even more so.

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