Tuesday, 27 March 2018

Why I write

Looking into the abyss: looking over the edge of Smeaton's Tower in Plymouth, 2015.
Two pink shoes peaking onto the edge of a curved metal pipe. Above is the ground: grass, path and pebble stones. Bird's eye view. 

Dearest readers, 
I've never told you all why I write this, apart from the mere fact that my second cousin Amy dropped to me in conversation that I should start writing a blog a good 18 months ago now. It's not just Amy's fault I write, although her encouragement to get me started has not gone unnoticed and without her telling me "I'd read it" in response to my "no one will read it", I would have not been challenged and would have not thought that I'd give it a go. I've always found writing an enjoyable task when it is self-directed and chosen. I hated English at school where I was made to be "creative" for this "creative writing" task for my GCSE English... I was always more comfortable with dealing with absolutes and detached things, things not including I or me in the construction just because I've never liked sharing things. It felt too personal. It also felt forced. It felt like I was sharing something too private. It wasn't something I was, or am, passionate about. I really didn't like it. Not helped my the "boring" books we had to read (MacBeth and Pride and Prejudice were never my cup of tea) and analyse to death without any guidance on how to do this in my mind... I even asked my English teacher how one analyses a text at my year eleven parents evening which I remember flummoxing her a bit. I got it in the end... at university three years later just by being given a bit of time and being given a bit more context to what we were studying. 

I write because this is therapeutic and it gives me a voice. I seem to be quite good at giving an earful in a written manner. My vocabulary seems much larger when I write to when I speak. I also get time to sit and actually think what I want to do. I don't always need it to be honest - I get an idea and I don't even need to plan. I don't do this freestyle nature during my academic work, don't worry! I'm not sure freestyling would get me far to be honest in there - I'd go off on a horrendous tangent. I write because I can make sense of things by putting them in front of me. I write because not everyone is very good at listening when I try to speak - they place their agenda on my words and can place me in the wrong when that was not my intention. I write because I do not get interrupted. I can just go for it and end the sentence with a full stop when I want to, not when someone else wants to or feels it appropriate. It gives me this technical word called "agency". 

I get a sense of freedom when I write too and I have found I can develop my own ideas, my own writing style and my own opinion through writing. Yes we do learn from others, I find great benefit from seminar style learning and listening to others. But I am cautious not to pinch too many of others ideas, but rather find my own and really own them. Something I'll need to do over the next 5 years or so. I can use my rote memory and I can use it very well, but creating and giving nuance to ones own thoughts and trajectory is so much more exciting. I get bored easily. I didn't get on with a 9-5 job, my brain felt it was wasting away. Having this allows my brain to keep going. 

This is also a safe space. A space where I can express myself in the words that I need at that time. It allows me to reflect and figure out why I am scared of people, why I get anxious, what stake depression and anxiety have in my life and communicate things I think people ought to know. It's, I hasten to say it, my space. Linking back to being free - it's somewhere that is my playground with words. My gym where I can figure things out but also in a way where it's not just all in my head. I'm not good necessarily at advocating for myself or for explaining why some things I need are necessary. But through writing I can share this. We monopolise verbal communication too much and yes, as much as I love to talk about my research area, autism and other bits and bobs, having the comfort to not always have to talk is nice. Having the confidence to sit in silence and reflect (and not always create noise pollution as I would have said when I was much younger) is a skill that I think we often miss on developing and we don't always see as valued in an extraverted society. It's truly okay to do this. 

I'll end on not communication is verbal, well, because it is not. This is not. It's words, but written. My words. We get it hammered into us at university, but it is very important just to consider full stop. 

tc
-krysiawally 

Saturday, 17 March 2018

Reflection in the mirror

Dearest readers,

This is off-piste, off topic and a departure from the standard wittering on here. Bear with me...

Today when I looked in my bathroom mirror, for the first time I saw an adult looking back at me. Someone who looks older than 18, someone who looks like they are making their way in the world, someone who is someone. It probably helped I'd put some makeup on for the first time in a while and was wearing a relatively smart coat, but it was there. An adult. Someone in their twenties with goals, ambitions, aspirations and a path ahead of me. 

I saw a someone. 

I've never been that bothered by age really and see it merely as a societal construct with a list of expectations and responsibilities cultured by other humans, our development and society at large. I don't feel old at 26. I'd never go back to being a child or a teenager ever, for then when I looked in the mirror my reflection was not who was on the outside. The collision of alienated and lost with looking like I knew what I was doing, not being what was expected of me, by society and myself I add, due to crippling anxiety. The little girl with the foreign name that no one could pronounce; that was "shy", that could work harder; that despised how she looked, how tall she was (yes, really - I used to be tall for my age at one point! I stopped growing at like 12) and the glasses she wore; that was so hard to get to know and was so 'odd' in comparison to others. I didn't see that today. 

I never normally spend that long looking at myself in the mirror and pondering philosophically. I try to ponder when I'm not looking at myself, it's distracting. I find when I get thoughts I need to write them down asap so I don't forget them, especially if it's for anything academic... But this struck me. 

I saw a someone. 

I saw someone who is starting an career (still at cogworks stage though so... ) on something I could have never dreamed I could or would do. I saw someone who knows what she wants and in spite of having my head shoved into a hot oven, still wants to do what I want to do. It's never been like this before. Normally I run away or retreat and give up - either due to practicalities of the situation or due to fear, sometimes both. I'm not saying this will be easy, as I know it won't, but I know this time it's not something I think I want that I then go off a week later. Like everything else I've ever 'wanted'. This is real. 

I saw a someone. 

I've never done anything in the proper orthodox manner. Now is no exception. Rules are made to be broken really, I mean, figuring out another perfectly feasible way to do something shows great ingenuity and creativity. This has always annoyed people somewhat, for example the speech therapist I used to see in my first year of school. I really did not see the point in talking to her. She annoyed me - no, she irritated me. I only was sent to see her because I refused to speak to the teaching staff at school. Again, didn't see the point in that. I was quite secure in just... being me and not needing to air off every five seconds as a five year old. Needless to say this speech therapist was more than likely cheesed off when I came out with full sentences on my terms. Bit like when the teaching staff realised I wasn't stupid. One person who did 'get' this and did not try to shove this out of me was my Chemistry teacher from years 10-13. He gave brilliant life advice one parents evening: to never change who I was and to keep doing things the way I do - "for I always got to the answer in the end". Taking A-level Chemistry without A-level Maths or Physics does require a certain amount of "figuring out". And that this was okay, gives great revelation. And I somehow got a B in Chemistry! 

I saw a someone. 

It's a minor miracle I am where I am in all honesty. I was never meant to be in mainstream education, I was written off by professionals as "will never amount to anything". My parents did not accept this. The way we work as a family; as free thinking, critical and not conforming paid off in an odd way.  People have often said there's something odd about us four. It's incredibly circumstantial that I am doing what I am, and I am very grateful and aware of this. 

I saw a someone. 

Meeting more people who are like me in terms of personality, interests, life view, agenda among other things has made me realise I should be okay with the cards I was drawn. I don't think it's an accident I am who I am. But through meeting people, both non-autistic and autistic, who are in my "tribe" - for a number of different reasons, made me realise I am not an accident and not alone. There are still people out there who just think I'm not their cup of tea - either through being me, what I do, or both - but I am no longer sat guarding my fort alone. 

I saw a someone. 

One someone who helped me find me cannot be missed here. He is contentious and not everyone wants to know. But I do. It is illogical (well to me it isn't. but that's a conversation for another day...) but the fact is, I'm not shifting on this. However hard people might try to rip this away from me, however hard the rocks that are chucked at me are and however bruised I end up - this is my faith. He is my friend. I've made my choice. He really is the only one who knows exactly what it's like to be in my shoes. We may kid ourselves with things like theory of mind, but that is only limited to humanity and even then, to certain constructs in humanity of which we are only just discovering. I don't think theory of mind should be applied across the whole population and diversity in a blanket way, but we've done it anyway as we like putting things into boxes and making things fit. It's the nuances we lose out on through falling into a trap that promises all the answers, rather than more questions than answers. 

I saw a someone. 

I saw a someone looking back at me, whom I did recognise and whom I know has an interesting path ahead. Things often pop out of nowhere for me. I'm used to it by now. There are things which only happen to me that could only happen to me. I say that not out of pity, but out of observation of my life over the last 26 1/2 years. For the first time when things have gone this down the pan, I have had so much uplift and support. It's coincidental, like many odd situations I end up in. I've come to realise I wouldn't have my life any other way. A 9-5 job and settling down is not for me yet - something is waiting out there, it's never felt right. And this someone is going to be doing something. 

That someone is me. 
I saw me. And I smiled back. And then I went about my day. 

tc
-krysiawally 

Thursday, 15 March 2018

Hiding vs showing

Dearest readers, 

A slightly late follow on from my last post... I gave 'Why didn't you tell me' a share through my social media for the year anniversary since I wrote it and made me think: people knowing who I am, is this an actual benefit or does this ultimately cause me more trouble than it is worth? Do I need to live a lie to live the life where I can do what my non-judged, non-stigmatised peers without the same attitudinal barriers? Have I got the energy to turn this around and to push for the space that ought to be equitable in terms of access and respect? How equitable are spaces in reality? 

I ask these questions not to say that I am hard done by, because in all reality I am quite privileged in a manner that not all autistic people are in terms of my social network around me of parents and sister, friends and colleagues (academic and otherwise). I pose these questions rather to ask how we hold ourselves responsible, if at all,  for the change that is so desperately needed. The change in terms of challenging attitudes and beliefs which perpetuate discrimination and difficulty: including discrimination that we do not see to be obvious or shocking to us; that which I believe in years to come we will be ashamed that we did not stand up to or stay something about. Through being open, you move from living a lie to actively having to fight for what others take for granted: understanding, respect, freedom of ideas, free from constraints of associated stereotypy and imagery tainting your identity, dignity... the list can go on... Have a reflect a minute. 

I am aware I sit at a injunction where I do not look "autistic" nor "disabled", therefore I might not seen to be truly representative nor 'really suffering' as I am 'so capable'. Given autism is such an internal thing, I very much know I am autistic and very much am aware of struggle, even if it is not externally obvious. This complete discord on what appears and what actually is sets the precedence for misunderstanding and having to fit into a lie just to get along, just to survive. Showing and telling who I actually am is dangerous - although I am no longer lying to myself and feel freer - it also means that I am consistently challenging people through my mere being and presence and my acceptance of who I am, along with my own self-determination, plans and goals.

Hiding in this sense is not cowardice; it is survival much of the time - I need to make that clear. It is exhausting and is not an easy option. 

So why would I not tell someone now? Fear of judgement and fear of being compartmentalised by assumptions.  For someone who hates being the centre of attention, this situation places me right into the centre of the storm and into the spotlight. It's scary in all honesty. But through accepting I am who I am and trying to be someone else has broken me and scarred me so much in the past, I know that this is the only option. 

tc
-krysiawally 

Monday, 5 March 2018

Standing against the tide


Dancing water fountain outside the Bellagio Hotel, Las Vegas, NV. July 2010.

Dearest readers,

This photo above from our last "big" family holiday in 2010 seems very appropriate in terms of not only the title which inspired me, but how dramatic it looks. This was taken on a holiday where we went to stay with my mum's aunt and uncle in Arizona after I had finished my A-levels. I googled the dancing water fountain and there are still shows outside the Bellagio Hotel on the Las Vegas strip if anyone is still interested. I haven't been back to the USA since we left on the 11th August 2010, so it has been a while. Staying in Las Vegas was one of my favourite parts of the trip, especially as an eighteen year old who loved bright colours and often made bold statements in clothing choice (ahem, sadly this is no longer the case anymore fortunately).

This photo and title are relevant, as this is seemingly what I am doing in many parts of my life. I actually started writing this about 3 weeks ago, but have just never got around to finishing it. I never have chosen to stand in a position where I thrust into a place where I am standing up and fighting for what is right. I know when I was younger I always wanted the quieter life. If I told my younger self I would be doing what I am now, I don't think I'd believe it and strongly refute it. I'd think you were lying or trying to wind me up. Standing for justice is what I want to do, not just because of the impact on me but also the fact that I am not alone in being misunderstood, discriminated against and not listened to. One of my friends called herself an "accidental activist" in an application she wrote - this also feels very much relevant to me. To sit and do nothing is to side with the oppression and signals that such action is permissable. It is not. It is never okay to twist people's words and transgress communication barriers to serve your own privilege. It is never okay to assume without asking of what intentions someone might have without confirming mutual understanding. It is never okay to not be aware of how your actions might impact and wound others, and the work they will then have to do to educate you on where you made that mistake and how you inflicted that wound. These are never okay. Not okay is an understatement. These are injurious to the autistic community and only serve to fuel further ignorance and pejorative attitudes. 

I, rather than spite and erupt in hate, will see this as a call for change. A call for zero tolerance of the above happening. I see this to have shown many others to have shown great humanity at a time when they need not have, whether they are obliged to or not. I am not erupting in anger, rather committed to changing the path so it becomes more accessible for others. I will not let bitterness consume me when people do things that are not okay. All that will do is injure me and me alone, having been here before. I do not deserve to be burnt up and poisoned, no one does. You through fuel on my fire though and it'll give me yet more reason to do what I want to do: change people's lives. It's been made pretty clear to me that this is what I want to do in my academic and other work; fight for the justice many should have that do not have out of love. Watch this space - I have many brain children on the back burner! 

I think it is fitting to end this short post on a note from Desmond Tutu: if you are neutral in situations of injustice, you have chosen the side of the oppressor. I urge you to consider and remember these words. 

tc
-krysiawally

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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