Wednesday, 30 May 2018

My poor little engine

Dearest readers,

No picture or otherwise today. I have a lot of titles in my drafts with no effort to start them. Each time they start but then they quickly end up off track and not saying what I want to say. I think I have a bit of writer's block. I want to find my words again and I'm hoping my voice returns soon.

As I lay here I can hear the ambulances from the local hospital whizzing down the main road. We live quite close to a main A road and to the local fire station so it's not something I am not used to, but today it's quite nice listening to the noises from the road and the helicopter flying overhead. This also makes it sound like I live in a very busy place when I don't. It's like an enclave surrounded by green with a view of the river, with the trees all the way down the hill to the river. We have lots of birds too: Jays, doves, wagtails, sparrows and the odd obese pigeon. Listening to these sounds is grounding, it makes me feel at home. Not home home, just earth home. I'm having a day where home home is enticing, so grounding and addressing my faith is important.

And yes I am in bed. It's a safe(ish) place and although writing this on my phone is a challenge, it's necessary.

I had a thought the other day, when I was having a tough time and I put it into words: I feel like I'm scraping the barrel; I don't know how much more I can do this. It felt dangerously so, like I was scraping oil out of the bottom of an engine. It does worry me I don't have the resources I used to gave, that they have all been 'used' and that I've hit the realisation I'm scraping dangerously thin. Yes I am resilient, but I think I have paid an ultimate cost of my mental health and my own energy. I'm not sure at 26 it's supposed to be like this, after years of fighting oppression, overcompensating and being generally drained. I hated school partly because it drained me socially, emotionally and psychologically. Primary school in particular. But then there's general other stuff I'm coming go realise is not normal human experience. Just other stuff.

I do worry about the barrel being scraped so thin. But I've also had the sense the job I will do doesn't currently exist, and that I can never really see myself getting old. I have no idea what these may mean. But what I do know is being me is a draining task.

I'm not sure how much more my engine can cope, like my little blue Agila when I drove around with no oil for three weeks. I was heartbroken how much damage I had caused to her.

But now I can't help thinking about the damage I'm doing to me, just through doing, being and dealing.

I know humans are resilient little things, but it does concern me.


Edit: here is a picture of the other poor little engine I was talking about... before I drove it up the steep hill on the way to university for three weeks running with an empty oil tank. Hence the analogy.
A bright blue, Wagon-A style Vauxhall Agila. My first car: Jan 2013-  Nov 2017. 

Thursday, 17 May 2018

Four reasons why we are not all "a little autistic"

The word 'no' written in white text on a pink and purple sky background

Dearest readers, 

Time to bust another myth, hard hats on. The title is the question: Why are we not a "little autistic"?  The gif has my answer: no. Actually, the gif has the shortened version of my answer. It's an absolute no for various reasons, although I can trace some of the reasons why this conclusion might be drawn. I guess I write this to explain what I mean and potentially what others may mean when this question is raised, or more often than not, as a statement of fact where others try to make sense of autism or  try assert that they know something rather than an opening to discourse and learning. It ends up with a discourse dominated with inequality, statements, false truths and assumptions. 

Reason number one: it's unreachable 
Being autistic is a state, a status quo, a way of being and experiencing the world, however this may be. It is woven intrinsically into who you are, how you exist, whatever your standpoint is. This, added to the fact that you cannot see "being autistic" (other than through stigma, which I will discuss in reason three) shows the internalised nature of the autistic subjectivity - or in English, how internal autism is. It is because of this internalised nature that being autistic is intangible, it's unreachable to those of us who are not part of this stance, this lifeworld, this experience. It is not something you can switch on and off, whatever others might say or assert on this matter. Suppressing it (through camouflaging) takes concerted energy and is like pushing a spring down flat. You have to keep pushing to keep up the fa├žade. The longer you push, the weaker you can get.

This is not to deny that the broader autism phenotype does not exist or to establish a binary and pit people against each other, rather to poise the thought that non-autistic people do not inhabit the same lifeworld as autistic people. That being said, there will be things that non-autistic people may recognise in an explanation or description of autism, and this is in part due to how we define autism, both in general and academic terms, which I will touch on in reason two.

Reason number two: just because we're all human, doesn't mean we all experience the same 
This draws on some of the same ideas from reason one, but takes them a bit further and in a different direction. As humans, we use what we know to make sense of what we don't know, therefore carrying our own personal bias into understanding new concepts or ideas. We do this whether we are aware of this or not, this is part of human nature, however hard we try to suppress it. I think as humans we are not always conscious of this occurring. We are artefacts of our era, environments and networks, through either rebelling against or conforming. They leave a trace on us.

What has this to do with autism and being autistic? Oh everything. How we conceptualise autism (what we think autism is) is inherently linked, influenced and impacted by not only us as artefacts and our surroundings but also how and in what capacity we have experienced autistic people. I think some of us sometimes forget this when entering discourse. Of course there are likely to be overlap in our experience of others, or indeed our own personal experiences. We cannot deny that and to say that there are no similarities is to discount the support and camaraderie that branches off our experiences of being autistic or supporting autistic people. However to homogenise (make everyone the same) across what some people can call a cross cultural divide... this is to oversimplify a lifeworld and reduce it beyond identification.

We are not "all a little autistic" just because you identify, as a non-autistic person, with our experiences and lifeworld. This again minimises the difficulty of living in a world which we are having to educate on how to accommodate us due to a disparity of majority rule and convenience. Yes, you may identify with elements because autistic people are human... funnily enough! It is the intensity of these experiences which set this apart, the importance placed upon them and how they integrate into how others perceive us.

Reason number three: we're stigmatized
Remember I said you cannot tell if someone is autistic from how they look (or similar). There is a slight caveat to this. You generally "tell" through someone's behaviour... yet for a state which is so intrinsically internal and personal, this notion at looking at behaviour is the complete opposite (as well as being assumptive in nature of the intention and function of behaviour). Complete oxymoron in my book. We are inherently pathologised and medicalised for being "us", for human "behaviours". We are marked. But you are not. We are marked apart. Having just finished a short module on my course looking at human behaviour, as well as my interest in people generally (I do love a good people-watch), there does seem to be (no - there is) a grey line on what is "acceptable" and what is not.

We are framed and filtered through "being autistic", yet you are not. You can't be a little of something only to cherry pick which parts you want, and that is not the essence of being autistic.

Even if we are not stigmatised for being autistic, we might be seen as odd, eccentric, peculiar, among other things. This is still a mark of difference, being marked apart. Whether we accept being autistic as 'us' or not, this mark of difference is very much noticed by others to some extent. 

Reason number four: I'm not the first, nor will be the last, to say this
The title sort of sums this one up. This statement is the pet peeve of many autistic people, and I have to admit I spend a lot of time having to try to undo the generic acceptance of the question/statement. I believe this statement will need continual deconstruction from autistic people and consistent challenging of perceptions in many arenas.

Although this reason may not be seen to answering the question of why we are not all a little autistic, what is does show is the ingrained nature of this and why we need to ask questions. This little statement brings autistic voices out, as it shows what state of play and what role we are expected to assume in society. It brings out the nature that our story is dominated by assumptions that are not our own, and signifies the frustration in fighting for our voice to be heard. Our self determination (getting ourselves heard) is stifled through a quagmire of some well-intentioned, but others not so, assumptions, generalisations and statements which are exclusionary in nature.

And these are some reasons why we all are not 'a little autistic'.


Thursday, 3 May 2018

Learning to amplify my voice: why loud is not always best

The strongest minds are often those whom the noisy world hears last - William Wordsworth

Dearest readers, 

This post is going to discuss one of my pet peeves. It has been one throughout my life, moreso when I was much younger however the more I meet people and groups of people vying for attention, clamour and recognition, the more I find myself drawn back to this. As I have grown, I have come to appreciate what actually it means to be "loud" and to be heard, what it means to speak over others, what it means to step on others trying to climb upwards. My pet peeve? The valuing of loud individuals over and at the expense of those who do not hold the power to be heard: be it through volume, power, experience, lifeworld, popularity or majority among other concepts. 

Why is this so utterly infuriating to me? For a start I am a bit of a bossy boots and am known for 'getting things done', but I sadly do not possess a loud voice in day to day life (apart from at home). Often when I do my workshops and teaching, I will often use a microphone so I do not feel like I have to shout. My voice is naturally quiet. There lies one assumption - that if you are quiet, you have nothing to say. Utter rubbish... I believe, as humans are social beings, we are primed to be social and interact as part of our social groups and therefore as part of a group mentality, volume transgresses through many boundaries and it is the style that gets heard. It can be the style that gets things done, and I will openly admit this... but it is not merely the volume alone which freaks me out. It is the leadership style (or lack of), the positionality and the listening skills of said individual with said volume which is most open to criticism. 

Listening is a skill which is learnt, we are not inherently born with it. Last time I spoke about some of the unconscious processes that we might encounter understanding what we hear and understand. I'm not perfect - for everything I hear goes through the filter from the standpoint of a caucasian autistic INFJ woman with my politics (including politics in general, disability and animal rights) and my life of what I have experienced thus far. I don't believe anyone is perfect in this. But some people, in our imperfection in this field, do have more skill than others and it is sadly not always those people who assume the role of a leader. 

Not feeling listened to is something I used to be quite well acquaintanced with. It was assumed when I was younger I had nothing to say much of the time, apart form in lessons when I actually wanted to listen and process and teaching staff would get annoyed that I would not participate. I am a reflector at heart and a thinker. I can learn through talking, and I do talk an awful lot about what I am passionate about. Ask those who mentor me and discuss my research and degree with me! However my timing was always out of sync with expectations. When I wanted to talk and share, my views were too late, too early or out of rhythm. When my view was expected, I was expected to produce something out of nothing. I often felt smothered when I had something to say and lost when I did not. I was always one step behind of the power and of the majority... 

Even though I never used to be 'out', it did feel like the stigma still followed me and this discredited what I tried to say. I can feel this in hindsight. 

You can probably tell I've been reading too much of Goffman. I had no idea I'd mention that when I started...

I have learnt to speak up, through realising my own confidence and that I am not inherently 'bad' or 'wrong', in some way ingrained into my thought processes through the past experiences above of being ignored, being insinuated that I'm wrong, being ridiculed or feeling just generally useless. I am still learning - through also finding places where I can be heard, where I can express myself in a manner which is respectful to me and allows me to have the agency that I so desperately needed through my earlier years. I do not believe it is just about me squeezing myself into something which does not fit for me. It is about negotiating and navigating my own fears and history to figure out more about me. It is about taking time to find a place where I can have agency, because in our extravert world we do so love to talk sometimes just for talking's sake, thus creating noise pollution and taking up space that someone else could inhibit. Space is not just a physical entity, but rather also has an audio dimension, whereby audio information takes up space. We need to be aware how we occupy this space, and also how accessible or inaccessible it might be to others. 

I don't believe everyone will ever be completely sensitive to this, but what I do know is that I don't think we consider this enough in many spheres. We don't challenge enough to push for accessibility in communication transgressing dimensions unknown to us (but how can we when we do not know of them?) 


Tuesday, 1 May 2018

Listening to what you want to hear

Peering down onto stairs going down. Stairs are carpeted, walls are bare brick. 

Dearest readers,

A question to start: are we listening to what we think others say... or are we listening to what others actually say?

How about we look at it this way. Are we placing our own bias purposely into our consideration of what others say? Are we framing  what we hear on previous experiences and also on what we would say in that situation? My argument would be that we always do this to a certain extent, for we use what we do know as scaffolds to piece together what we don't. We construct these 'new' ideas using reference points, many of which are likely to be our own. It is highly likely there are times that we don't realise we filter all information through our own understanding, but I can bet you we can become more aware. I furthermore argue that through using this filter to scaffold together our understanding, we can, and do, distort what others may mean or rather, intend to mean, in communication. 

One reason for this is the difficulty in constructing ideas in a vacuum: that is to say that we need these scaffolds I aforementioned in order to construct ideas in the first place. Abstraction does not stand up on its own. Even ideas and concepts that are not so concrete to conceptualise are composed of units which we understand from somewhere, be it something we have already encountered and embodied or have created ourselves. Abstract ideas in themselves are only truly abstract from lifeworlds and hard to cling onto if the way in which we describe and share them is not attainable by those with whom we share them with. 

Remember the above as we journey forward into listening to others. Through the idea of us scaffolding what we hear, i.e. the information which we listen to, we then, I believe, unconsciously create a scaffold around that which we hear to contextualise this into a meaning. A meaning, for all intents and purposes, which is personal and unique to that one situation that that one time in that one time point.  It is also unique to us as individuals. Each of us will have different previous knowledge, experiences, understanding and lifeworlds, even if we like to argue that on a generalisable stand, many of us may share the same experiences, knowledge base or even to an extent, lifeworld. But it is through this overgeneralisation and homogenising that we lose nuance, we lose detail and we crucially lose the uniqueness of what it means to be an individual. Some of us over assume similarity in knowledge and experiences, and we do this at our own detriment. 

We also not only over-assume between ourselves and others with whom we communicate and share our words, worlds and so much more with, but we also place assumptions onto certain groups of people (in addition to the former). This is where it starts to get a bit mind boggling as to how many dynamics are at play - it can almost end up a bit like the game Kerplunk where you pull out the sticks one at a time and try not to let the marbles drop through. We assimilate groups of people to have similar intentions (for example, autistic people) or perhaps will use our previous experience of one or two people from said group as scaffolds, and this in turn, will bias everything that person in said target group will do. We may not do this intentionally, but it can happen and it does happen. Furthermore through assimilating groups of people together and assuming a certain dynamic can represent a dangerous power dynamic at play - one where there is imbalance and the "stigmatised" will have to "swim and paddle furiously so as not to drown" in the most visual manner possible. 

I do question how aware we are of our own standpoints and lifeworlds and I do think this is acutely important when considering how we communicate with others, and what we may interpret from what they may say. This also trails over into other aspects of communication too. A lack of awareness of standpoints and understanding of differing scaffolding to construct ideas is likely to result in misconstrued understanding. 

Final words to leave you with: are you really listening to what you are intended to hear, or are you listening to what you have understood? 


Is a thing... right?

Do you know why I admire you, Newt? You do not seek power. You simply ask, "Is a thing... right?" - Quote from Albus Dumbled...

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