Wednesday, 31 January 2018

Why you'd never guess

Dearest readers,

I wanted write something that perhaps made us think again and consider appearances twice before passing judgement or assumption. It is one of those things that is definitely easier said than done for all of us. Yes it might be part of human nature, yet through saying this we can almost imply it as an excuse for doing, saying or thinking these things so I would always be on the cautious side when using the "human nature" phrase. I wanted to share one of the number one things people never guess about me:

I would have never guessed you're autistic 

Queue me wanting to face palm the nearest wall. I'm never quite sure what people are implying to be honest when I get told this... I mean like many memes and autistic voices have stated themselves autism has no look. But I don't think this is what people are getting at in all honesty. I know this is to do in part with how I appear and carry myself - oh but you're not stereotypical, you're doing a good job - placing a value on "normative" (normal) behaviour and stigmatising anything which is basically, not. I'm going to say this straight: through this valuing, however inadvertent you might mean it, it cuts and divides into groups who can "hide" and who can't, therefore saying if you can fit in, you're OK. Echoes and harps back to 1930s Germany, seems relevant in today's Tory Britain to mention this. Since you're on the computer, I'm sure you can put two and two together (hint: Aktion T-4) and realise the quagmire that has been stepped into here. It goes against the notion of all humans as valued, rather only those who can fit certain requirements, which is abhorrent. Also incredibly against all of my theology, as you may have seen in other posts. From this, God valuing and loving all, I cannot abide by anything which devalues (or worse) people. I don't tolerate it quite simply, especially when linking it to this. 

Although I am a keen observer of people and very good at throwing smoke screens to divert things away from me, it's not always an active and recognised thing I do. I don't calculate and plan in a manipulative manner, rather it is something that I do now without me even realising it. In fact the older I have become, the more undercover this seems to go, but still the same level of effort is required. I have to admit since I chose to not squeeze myself into a box that does not fit me anymore in December 2015, I have made it part of my agenda to put myself into environments where I do not have to hide; so I can excavate what's actually going on. 

I never used to want to "be autistic". I remember after many days out or evening birthday parties being in tears, being broken, wanting to no longer be here and being confused yet no one else would see this - certainly not those who might have been in the run up involved, whether their actions were intentional to causing upset or not. A lot of the time, it was not. I can see that now, yet as a young teenager I did not want to be me and I certainly did not want people to think I was broken. I used to patch everything together so people would not guess, not to be manipulative or popular, rather to not get attention (spoiler - did not always work, I was pretty vulnerable). Being autistic was not understood - there was no immediate link to me. It is stigmatising concept to "carry" and I certainly felt that as a teenager. With little understanding of what was going on, denial, self-hatred and being autistic - through all that into a pan and you get a nice cocktail of disaster there. The only information for autistic people was that of people getting "better" that I could access - very little on self-acceptance. It was my agenda to go unnoticed: a measure of self-protection withdrawing into a shell. The shell was an illusion and a decoy. Having had time to figure out what is going on, I can now see this. 

It's only in the last 2 and a bit years I have really accepted who I am and learnt it is actually OK to be me. Being autistic is not something to be ashamed of. Unravelling an intensely internal ball of knots takes time and a vast amount of self-discovery. Therefore not "looking autistic" implies that I ought to carry shame for the way I am: the way my brain is wired and the manner in which I perceive the world. The word perception in itself is a perception - your perception is merely a perception in that vain too, except yours is generally more validated and "socially acceptable". I know mine is true and I've had to fight, tactfully and at other times not so tactfully, for it to be listened to and not washed over or minimised through a lens that might have not experienced the path I walk along in all its vibrancy. The world and I do not always agree. 

Through not putting myself into the constraints of a box that bound me and injured me for 24 years, I'd be appreciative of acknowledgement of who I am. I still get hurt from time to time - it's an ongoing process - but seeing being autistic as an important part of my life experience, perception and wiring that is smattered through me and ought to be as valued, without condition of ability, as much as the next brain or perception. That unconditional love Jesus meant - very relevant here, challenging you. 

tc
-krysiawally 

Saturday, 20 January 2018

Not a puzzle piece

Dearest readers, 

I had this idea I had earlier in the week whilst chasing up various people on emails; it's been a hectic week on emails and I am looking forward to not having to be glued to my outlook account over the next week. I'm going to end up with trigger finger at this rate! I'm also relieved the auto-correct on my outlook on my phone has not failed like on other pieces of software I have, as anyone who knows when I Facebook message or WhatsApp, they have a good time trying to decode what the message might be! I've even tried recalibrating my phone, I'm just rubbish at hitting the correct keys. The thought that came to my mind is highly linked to the quote, not from myself, but from e. e. cummings. It's a quote I've had saved on my personal social media for some time. I must have been the quote for the first time sometime between 2010 and 2012.


It always struck me as a musing that was very relevant to me: for many years I had felt threatened by peer pressure and vulnerable for being who I was. But it was only a week or so ago the impact of this quote dawned on me in relation to being autistic, to being who I really am. It served to reinforce the stubbornness I had as a teenager of refusing to shop in New Look for a good year or so because my peers were and the young person in sixth form searching indie sites refusing to listen to the same music on my iPod as everyone else. I had always resisted. I only saw the series 'Friends' for the first time three weeks ago. This quote not only embodied these experiences of wanting to be "me", but also knowing that just being autistic, not being passive and accepting of merely being a deficit or a puzzle piece and telling people that the world can be so much better.

I don't believe I'm a puzzle piece because I am not incomplete. I don't take being assumed as unsolvable lightly and takes away my voice. I'm not a puzzle piece because God make each person whole - he doesn't leave unfinished jobs. This is society's perception of wholeness, being a puzzle piece, it's not God's. Saying people are incomplete puzzles is insulting to creation and our Creator. It implies He is careless and cares more about one person than another, which is not true. He loves us all more dearly and equally than any one of us can fathom. Yes there are many things we as humans muck up, break and leave incomplete. But I do not believe for one second that God leaves people incomplete. Through buying into the idea that autistic people are puzzles is not right. Yes we can be confusing, but I would like to add other people are equally as confusing and being confusing is part of human nature. But with implying it onto one group of individuals as an earmark for identity is wrong.

It does not show our assets or the whole picture: life in all its fullness. We are so constrained by what is perceived right, correct and normal in terms of life experiences and communication that we don't often stray far from what we do. It might be beyond what we can conceptualise or imagine, mirroring much of what is out there about God. He is so much more than we can imagine, when we so desperately try to put Him in little boxes (spoiler:- doesn't work). Communication, emotional experiences, empathy and internalised experiences are also so much bigger than what we can fathom. We limit ourselves in so many ways through not open our eyes and hearts up to the consideration that we might only be experiencing only part of what can be.

I guess through looking at things in this way we can see how maybe we ought not to follow a sign or a symbol without giving it prior thought as to what is actually implied. As Christians, we have a responsibility, I believe, to also think about when we endorse something to think what Jesus would think of this endorsement and the implications of it. Following God is not just a Sunday thing, but actively trickles into every part of our lives and this includes considering how groups are represented and fighting for the minorities let down by society. We won't get it right all the time, as we are human, but it's keeping an open heart to consider views and voices of those who it directly implies and considering how Jesus would act in this situation. It's a lifestyle of questioning and fighting for those who are denied a voice. Sometimes just not aligning ourselves with something that is problematic as a group speaks volumes.

tc
-krysiawally


Monday, 15 January 2018

Home and freedom

Dearest readers, 

Long time no update. After finding some new inspiration, having some rest and focusing on my work I think I may be ready to blog again. I had this idea a while back after having a conversation about where home may be with one of my friends. I'm not very good at being overly reflective on the spot and if I'm quite honest, I can't even remember what I said. But later that day, I remembered: home is not here. I've had this sense that my home is not here for a while now. Home for me isn't a geographic location, a preferred place, the place I grew up (although actually it is, but that's not the tangent I'm going down). 

A fine description of where I find home can be found below in this excerpt below, not my writing but very aptly and succinctly demonstrates what exactly I'm on about: 


I've had this sense for some while, realising after watching my life literally fall to pieces in front of me and had the dreams I used to have torn from me that actually there is only one actual real place, beyond geographical dimension, that provides the safe rest that I was craving. It came out of nowhere, from tears of frustration and being misunderstood, both lifelong experiences and journeys I have experienced. Then I realised what I said - I was not referring to home in the sense of my house, as I was sat in my bedroom of the house my parents and I have lived in for the last 16 years and my family have owned for well over 70 years. You'd think with the longevity of those numbers that home would be signified through that and having that rooting to one place which some may dream of. However it has been since we moved there and other changes that I started to struggle and notice that who I thought I was and how I presented myself did not match. I had been so looked after by my friends through my first phase of education, that I did not understand what I was doing that was so different or why I was hurting so much and so vulnerable.

Home for me is and will be free and beyond the constraints of categories, stigma and being limited by society. This struck me a while back and I re-remembered this after the conversation with my friend. When we say "there'll be no pain", I think we often jump forward and presume physical pain or mental/psychological pain in terms of being taken away and made right. What we don't consider is those whose brains work differently, who inhabit a world differing from the many yet still part of a significant minority. We might overlook the role of how our world works and how we interact with it and the complexities and nuances that are beyond the black and white of 'ill' and 'well'. Through neglecting this aspect, we peddle the idea that some brains are more valuable and inherently 'better' than others, which is just so absurd when we look at the concepts of love and equality, especially biblically based. I firmly believe two things we as humans are very good at oversimplifying are autism and God. We underestimate that some things may be beyond human categorisation. I think we don't give either the respect due for being so vast. Not to say that having faith is complicated - for faith is accessible to any and all and placing barriers is fundamentally wrong in my opinion for Jesus is open to all - but the theology and understanding of these things and to prance about like we know so much and not listening, is so very dangerous. 

I had a very interesting conversation about healing and theology with a friend just before Christmas on the way up to Greater London in my car - we were on our way to a meal organised by a mutual friend. This turned quickly to an autism focus, given our mutual interest in the subject. We discussed: what would healing of autism look like, what would happen to autistic people when they go to heaven. When we focus on the medical model of 'making people better' or 'like us', we miss the true experience of being autistic which is so internal and hard to grasp at if you have never had this experience before. Autistic people can have many assets (I'm careful not to use the word gifted, as I don't want to make it sound like we are all savants as we are not) that we look past - for example attention to detail, honesty, integrity just to name a couple. If we 'heal' autism, do we take these away, thus changing fundamentally the person in their entirety? My view is yes we do. This also draws on knowing where to draw the line on who is 'disordered' and who is not and what informs our view on this. If we are to love like Jesus, which involves accepting others with open arms and valuing them, surely calling someone 'disordered' is not part of that as someone who might not know exactly what that particular autistic person is experiencing in their life. We lessen their value rather than look to what we can change in ourselves, harping back to picking the dust out of someone's eye while leaving the log in ours, a pretty large one at that in this case. I'm not saying people don't suffer at the hands of others and don't show distress who are autistic, many of us do. It is more where our hurt originates from and what may lead to pain. 

This means for home, somewhere where I am truly accepted for who I am and how I was made. An escape from this world where I am misunderstood, but somewhere where I am understood and where God understands. Somewhere where I am valued as a person, as the Bible says - God knows each one of us by name (I can just about remember mine at times ... ) and moreover, loves us. Loving is to respect and to empathise appropriately with us and to listen to us. I see this as the world that is not doing this, stripping many of dignity and voice through outdated and barbaric policies, pejorative attitudes and neglect. For me, faith is hope and knowing that I won't have to experience this forever. Not everyone will interact with this in the same way, as we are different and come from differing beliefs and perspectives. But I would like to express a sincere portrait of how just because we hear what the loudest people shout, there might be a quiet voice in the corner watching this and who shows the truth. 

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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