You Will Never Speak For Me

Okay, I’ve been inactive, I’m not even going to explain myself on that one this time because it’s a common occurrence, it’s what being a man with limited resources and unlimited depression does when he has a blog. I’m back, with a vengeance I might add, to put in my two cents on Autism Awareness Month, particularly, how many of you might be approaching this the wrong way. My first point, is your profile picture covered with a blue filter? Well then, read on, you might reconsider that filter by the end of this article.

Autism Awareness Month, largely paraded by the charity Autism Speaks, is about raising awareness of the trials and tribulations that come with autism, both for those who are on the spectrum and those who have loved ones that are. Speaking as a man both on the spectrum and related to another who is, I won’t deny, there are trying moments in life that were daunting to us but perfectly normal events to the other kids in classes or colleagues at work places. Social etiquette, for example, eluded me for so long that I got angry at other people for having it when I did not, I came to think of myself as living in a world of imbeciles, not realising that not only did the world struggle to understand me, I too struggled to understand the world. However, my biggest qualms with Autism Awareness can be summarised thusly:

  1. People are AWARE, what they lack is UNDERSTANDING
  2. Autism Speaks

I shall challenge these points in reverse order to how they are listed, because Autism Speaks is to autism what Donald Trump is to Mexico – hilariously misinformed and full of hatred towards their people.

Autism Speaks is not a happy jolly charity as they might have you believe, their solution to the struggles of the autistic community would be akin to Oxfam forming a militia and marching on Syria, Autism Speaks seeks a ‘cure’ to autism, a ‘prevention’ of it. Don’t believe me? Check their ‘About Us’ section on their site:

“Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism”

Direct quote. Causes, prevention, treatments and cure. You know, like it were a disease. Autism Speaks has been called out in the past on recommending things such as bleach enemas and allowing parents to express their desire to ‘fix’ their child, sometimes with said child in the room. Now this, this is personal, this isn’t just social justice speaking, this is “You do not tell me that I, my brother and thousands of others are broken human beings you need to fix, we are fucking beautiful”.

You know what you’re saying when you want to cure someone of autism? You’re saying you want to kill them and replace them with someone similar but normal. Autism affects how someone sees the world, how they think, what they like, what they don’t like, what knowledge they have, what things they will remember, their hopes, dreams and fears are all dictated by autism, it is not a disease or curse but a whole other way of existing as a human being. I have tried to explain this to people as being left-handed in a right-handed world. You may have challenges trying to be like the others but in the end, you find a way and your way is different but it works just the same in the end and there’s no reason a left-handed person is less valid than a right-handed one. You could try to make that person right-handed but it would change how they do everything, it would mean they had to relearn everything they ever knew about how to interact with the world and your friend or family member would be someone entirely different for it. In a sense, you would replace them with someone you perceive to be more normal, or rather, more like what you think should be normal. If you want to screen for autistic children or find a way to fix them, you want them dead. This isn’t a disability, this is a way of being human that you cannot understand and that is why you want us dead.

So you might understand why I say we don’t need your awareness campaigns, much less do we need a charity that thinks of us as a blight to be remedied. Autism and aspergers aren’t things you need to raise awareness for, they are things you need to raise understanding of. I generally scoff at awareness campaigns, who at this point is still clueless what breast cancer is? We KNOW what cancer is, we KNOW what diabetes is, we KNOW what Parkinson’s is, teach people what it means to live with these things and how to help those who have to, make people understand why diabetes isn’t just “Ate too much sugary food” or why cancer isn’t just “Thing that can kill you but if you take pills and go bald, you might not die”. The ALS Ice Bucket challenge was the last awareness campaign I agreed with. Why? I HAD NO FUCKING IDEA WHAT IT WAS. Awareness is Stage One, Stage Two is education. Imagine if your teacher taught you to read by pointing at a book repeatedly and went
“That’s a book. People read those”
Ok great, how? Why? Where do I get a book? What is a book for?
“That’s a book. People read those”
I am aware that is a book, tell me more.
“That’s a…”
YOU SEE THE PROBLEM?

Also, putting autism in a class with cancer and motor-neurone disease in that it is something you raise awareness for, you class it as a problem. If a charity is ‘raising awareness’, it is telling you there is a problem to be fixed. If there is a disease we cannot cure, we need to be aware of it. If there is a country ravaged by war, we need to be aware of it. If there are people dying in ways we didn’t realise, we need to be aware of it. What the fuck do we need Autism Awareness for? I’m aware it exists, what else will you do Autism Speaks? Nothing, except witter on about how hard it is to deal with your kids because they’re noisy or won’t keep their jumper on or don’t like other children.

I’m sorry to get so angry, except I’m not. Autism Speaks does not, has never and probably never will speak for the autistic community, it speaks for those who wish there wasn’t an autistic community, and I personally am glad there is an autistic community. I tried talking this over with my brother, who also has autism, and he thought perhaps he wouldn’t miss it if he didn’t have it and I had to try to explain to him he couldn’t perceive not having it because having it has shaped his entire being. The idea of being neurotypical is just inconceivable to me, it would not be me, he could have my face and voice but he would have different friends, feelings and interests. Please, for goodness sake, do not partake in lighting it up blue, “Go Red Instead” is a counter-campaign about raising awareness of Autism Speaks, who, if they want centre-stage this month, let’s make you aware that they’re not just about helping families live with autism, they’re about helping families NOT have to live with autism, helping families abandon autistic children, helping families mutilate autistic children and poison them. Check it out at the link below and please, remember that autism doesn’t need a cure, it needs people to realise that we are just like you, seek to understand us like you seek to understand your fellow men, for we are they.

http://profile.actionsprout.com/o/18D37E

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No Half Measures

Hello everyone, this is a personal post so this may well be less funny or less interesting than a lot of my other posts but I write these mostly for myself and for those who care about what goes on in my head on an emotional level, rather than just poking at my throbbing satire gland (it’s a part of the brain found almost exclusively in bemused British people like myself or David Mitchell). Now as some of you may well be aware, I fight an ever-shifting war in my head against the forces of anger and misery, two emotions that want total dominion over me as a person and to completely eradicate all feelings of joy, hope or ambition. I can often keep these two demons at bay with some macho gusto and a dose of laughter but then sometimes it comes on like a surge, as if turning the taps to get a glass of water and instead causing a flood that sinks half the country. I can’t fully explain why this happens but I’m going to attempt to do so on this page, mostly for my own benefit if I am honest.

Going back to little Jacob, ages twelve and under, my emotional scale was not really that vast, as expected of a child, but it was always dramatic. I couldn’t be slightly happy, I had to be really happy. I couldn’t be slightly upset, I had to be bawling with tears and so on and so on. Whilst this made it easier to tell what mood I was in when, it meant I could switch and overreact for no apparent reason but to me it felt like the world wasn’t reacting enough, making me feel like I was an anime character in a stage production of Pride and Prejudice – jarring, inappropriate, misplaced. As I grew older and wiser and started to develop feelings such as sympathy and affection, I tried to learn what it meant to be human, to react like a human being to certain scenarios but the emotions that eluded me the most were anger and empathy. I had no empathy and too much anger and I was essentially selfish; I maintained these personal relationships because these people could offer me things I wanted like praise, an audience or they were the ones who shared their food with me. I know that sounds horrid but this is the basis upon which relationships are formed, I just didn’t know how to make those relationships more meaningful. You all do it, you are attracted to people that can offer you things you want, like love, companionship, shared interests and so on, you don’t form relationships based on what you can give other people, you give people things because you expect something in return even if it’s the satisfying feeling of being a good person.

Move on ahead to age sixteen and I’ve developed past a world dictated by my selfish desires and my anger, swearing to wash my hands of my previously violent nature. I reacted with such anger because I was confused and scared by the conflicts, by criticism and anger gave me power, it scared the people who used to scare me. However, anger is not a way to live in a world of adults and as a man legally responsible for his own actions, I had to settle down. I also became more and more confident in romantic affairs, having learnt from a long run of failures and whilst I’m currently single, the relationships after I left school lasted longer and I still talk to those ex-girlfriends because I was more emotionally mature in my decisions, rather than a selfish fool. Love is complex, undoubtedly, and I’m no expert now and I have my drawbacks as a lover of course but I like to think I’m much wiser now and if I were looking for a long-term relationship, it’d work out much better now than it would if I was looking four years ago. Incidentally, if one of my ex-girlfriends is reading this, don’t this as me saying “Our relationship was meaningless”, take it more as “I have matured since our relationship and the fact things didn’t work out between us helped me to learn more about myself”. I imagine I could probably maintain healthy relationships with one of my ex-girlfriends if they met me now as this Jacob and not as the respective version of myself they dated X number of years ago.

Today, I have become much more aware of my emotions and can slide into them to a certain degree, rather than switch and jump around like a teleporting pogo stick on a roundabout. I can be slightly annoyed, really annoyed, pretty angry and then furious, rather than “Back off now or I snap… YOU WISH TO CONTINUE? THEN YOU WISH TO DIE!”. By the same token, I can now be pleased and then happy, rather than just very happy provided you did something I really wanted. I still suck at gratitude though, comes off as sarcasm but then when you’re as sarcastic as I am, I think people just struggle to tell what’s sincere and what isn’t. The only more British sounding curse is “He must drink tea to survive… but cannot stand the taste!”. However, a difficulty I now face is once I’m set onto a mood scale, from annoyed to angry or displeased to abysmal, I struggle to switch unless something happens to dramatically pull me off the scale. For example, say I receive some bad news – If I am not met with good news that puts the bad news into a realm of obscurity, I get more and more depressed about my situation in really, a rather stupid way.
“Oh, another person is ignoring me on Facebook. Oh god, this is typical, I get attached to someone and then they start hating me. I bet they tell their friends I’m a twat, maybe they want me to die in a hole so I can’t keep messaging them, asking them to come have a drink with me. I have no friends really, they all hate me. I hate me. I’m going to try and hide in the corner until I become one with the wall and cease to exist”
Now logically, I know this is stupid and the logic centre of my brain is shaking me vigorously as it tries to suggest that said person is busy, or in a bad mood, or left their Facebook logged on but isn’t at the computer. However, the nasty little gremlins take this scrap and stretch it into a full on reason to want to disappear off the face of the planet. So unless this person responds with big smiles and hugs and we get really chatty pronto or similarly, someone else I want to talk to chimes in and gets cosy with me, the gremlins win. I know this is stupid but I can’t help it and need to find a way out of it.

Far be it from me to lean on a loser’s limp but I’ve been dealt a bad hand in the emotional aspect of my brain. Sure, I have a natural talent for writing and constructing great sentences off the top of my head but I lack natural empathy, I cannot grasp complex emotions except by emulating them through intelligent guessing and I seem to have unreasonable senses of guilt despite not feeling the pain of others. Allow me to explain, empathy works by putting yourself in someone else’s shoes and internally reacting how you would in their situation to then share their pain and guide them through it. You help someone grieve the loss of a loved one by internally creating the emotions you would feel if you lost a loved one, or remembering an instance in which you did. By doing this, you share the pain but you know it is a hypothetical scenario you only created very briefly in your subconscious to give you a sense of understanding. I can’t do that. I use logic to emulate empathy by making an intelligent guess. Oh your dog died? You must be… sad… yes, that’d make you sad. What helps sad people? Sad people want food right? I will fetch biscuits and then this will make them better. Only in cases where I have been in their shoes (losing a loved one, being bullied for being different, having rotten siblings) can I feel their pain but otherwise I’m just guessing. I can’t read faces either, unless I’ve known the person and interacted with them physically on a regular basis for a few months. I know it, I’m terrible. Despite all this and knowing my limitations logically, I feel guilt. If you’re crying and in pain and my advice has been useless and you don’t want biscuits, I want to cry because I’m useless to you. I blame myself that the person isn’t happy. As a result, I often put up with a lot of abuse on an emotional level out of guilt, and admittedly, the desperate hope that I’ll get the respect I deserve one day.

Emotions are hard and if you read this thinking “The fuck is this guy saying? Is he a robot or just thick?” then you’re a lucky sod, your emotional register is as sound as a pound sterling. However, you might somehow relate to this article, perhaps you have AS like myself or maybe you are just very very intelligent on a number of levels and if so then you’ll understand why I’ve written this and why I act the way I do at times. I want to conclude by apologising for people who feel they are inadequate when they can’t “make me smile”, it’s a near impossible task and it is not your fault, gremlins have just got into the works again and I usually come out of it given time and quiet support (or the sudden realisation something great is about to happen to me)