Thursday, 13 February 2020

Booklet review: the Upside Down Kingdom of Heaven

Image description: a barn with windows covered in wooden paintings in bright colours in Bratislava
Taken: 16th August 2015

Dearest readers,

I had the delight of reviewing a booklet on one aspect of a colleague's recently completed PhD research.

You can access the link, via the inclusive church website, here.


Tuesday, 4 February 2020

Memory as VCR

Image description: London Underground sign at Piccadilly Circus with the famous Coca Cola billboard in the background
Taken: 2nd January 2016

Dearest readers,

I want to take you today to a place of freedom in my imagination and memory. There's this little myth flying around that autistic people cannot have imagination... that is not true. Not only will I display this to you now, but I also want you to consider how we define 'imagination', what boundaries we place onto it and how we understand it impacts how we use it as a term. I have a very rich and vivid memory. I can remember things and replay them in my mind as if they are on film or camera. I have no idea if anyone else can do this. Nor does it really bother me if others can, or cannot. I've always thought that being able to plug a HDMI lead into me to transmit the images out would be fascinating, although that is obviously not the way this sort of thing works.

I can vividly remember telling my year 3 teacher I hated swimming lessons when walking away from the classroom, when she had asked me how swimming was. She didn't buy it. I was effectively dismissed in that moment as I was told 'I'm sure it will get better'. It didn't and I wish I could have been removed from the sessions. I can only imagine how less anxious and traumatised my Junior school years would have been; the screaming and utter despair of trying to explain how unimaginably emotionally painful it was to be shouted and screamed at, to not be able to hear with the echo and the voices bouncing off each other and merging into one, to feel like a 'no' from me was not respected in terms of fear. In this moment I not only remember the actions and can see them, but can smell the smells, taste the tastes and am flooded with the emotions of 8 year old me.

I can imagine this through actively recalling it, like opening up a VCR of my life past. Although I cannot 'see' myself in the future (and to be honest, how realistic is any portrayal really), being able to piece together the pieces. It's not just facts that I can recall. I can go back with the knowledge I have now and piece things together that I could not before. As I'm not great at sharing verbally this sort of stuff, perhaps because it is just too rich to reduce to words....? How can you express in words something which cannot be described in words, or that using words would change the meaning of the message?

I share this openly today as it was today that I remembered the impact that swimming lessons at school had. I remember a before and an after. I remember the change and having to bottle it all up, and not show anyone what I felt, as it would have been 'punished' for showing distress (which in fundamentally wrong). I am freed by the fact I can write this, and that my written word and prose can share this with far greater dignity than my spoken word.


Friday, 24 January 2020

Anxiety: my body just wants to keep me safe

Image description: a row of houses in shadow in front of a sunrise
Taken 18th January 2020

Dearest readers,

I have something I want to share today. Typing here at my phone, I am anxious. Yes that's right, anxious. But I've also just read something amazing on Instagram which has really helped. I follow a lot of the self care and mental health/wellbeing accounts on Instagram- it's a purely personal account which I have often used in times of overload, overwhelm and despair. It is freeing to be able to say no through imagery and photographs as well as motivate myself through deep swathes of work, and reminding myself my work is not my identity.

The wonderful thing I saw? A comment. It was on a mental health account's post regarding anxiety and the body. It was around the wisdom of our bodies and how they can have our best interests at heart. I think this might be giving a tad too much agency to cells here but ldt me continue. Symptoms of anxiety such as hypervilgence notably - is our body's way of keeping us safe. It places our safety - however irrational the thoughts behind it - at the forefront.

I have a long history in terms of my experience with hypervilgence. It's a learnt reaction in many ways - where my body warns me of where I have been hurt before. I physically remember things - through feelings and emotions flooding through me. I am taken back to moments physically, even if mentally I am still in the present. It in some ways for me in ghost of Christmas past.

Also as an autistic person, hypervilgence I feel is a reminder for me not to hurt myself in the same way over and over. It tries to protect me in an odd way. Sometimes it is wrong, like s dig barking at the postman. Other times it is a good reminder that I need to respect my body and brain, and be gentle to myself. I am more sensitive to much stimuli. I need to recognise and respect myself to know when to give my best, and when I need to rest or stop. It is often my body that will tell me before my brain.

How to differentiate? An art rather than a science. I'm not sure I can help you or tell you how. If I could say I would, but I cannot. Many of the finer things in life we cannot put a finger on. Traumatic events and my own virtualisation and disrespect for my own body have lead to my current lived experience. I dont think though, that there is no beauty in this sadness. The voices of my fellow anxious and depressed peers have shed light on finding an odd beauty in the darkness.


Tuesday, 21 January 2020

Life Hacks podcast - some snippets

Image description: a black and white picture of a lawn roller, laid up against a shed. It is on patio squares.
Taken: 12th January 2020

Dearest readers,

Just before Christmas, I did a short Life Hacks podcast for BBC Radio 1 on the story about my journey to self acceptance as an autistic person. As this week’s audio diary, I thought I would share some of the thoughts I had when preparing for the podcast. I wanted to share not so much my story as the only way, or the best way. It is not the best. What I wanted to do was to start a positive and non-pathological (e.g. not medical and deficit based) narrative by an autistic person. Here are some snippets I prepared:

Being autistic makes your life experience qualitatively different - and my experience in school is no different in that regard. I don’t want to give a sob story of how hard it can be, as there are many people's stories who are much more poignant than mine. Rather being autistic in a majority non-autistic world did lead to frequent communication breakdown, which can be exemplified by the double empathy problem. This is a theory of autism, coined by Dr Damian Milton, whereby both autistic and non-autistic people can struggle to understand each other and their life experiences. This basically sums up a lot of my life, but especially before I started to get to grips with who I am as an autistic person. I only heard the narrative of me being wrong, me being broken, me misunderstanding - and me failing each time.

Through realising I cannot keep putting unrealistic expectations upon myself, and that everytime that I did, things fell apart, went badly or severely impacted my mental health in a very negative way. - I came to accept my identity. It was almost like I was squeezing myself into a box that I didn’t even know existed. I had normative expectations of myself - where I did not listen to my body when it was in pain, physically, psychologically or emotionally. I realised after various jobs where I had tried to fit in, but didn’t, that I could not do this anymore. It was a true penny drop moment I had aged 24 when unemployed, having walked from my career in administration and not knowing what to do or where to go next, and feeling like my life was repeatedly in tatters whatever I tried to do.

My own self-acceptance has made me much more open minded and less judgemental and stuck up than I used to be. Through looking at how I need to love myself, it has transformed how I love other people - and by love I mean interact with, give support to, actively listen to and learn from others. Love is a word we throw around a lot without due thought to what we always mean; it sticks us together like glue yet we don’t define it well enough. For me, it is action, behaviour and respect - not some wishy washy feeling.

It has also broken down fragile barriers which had previously encased me  - possibly in fear - and changed me for the better. It’s allowed me to find who I am - which I had internalised and buried out of my own fear and uncertainty since I was a young child.

And finally it has opened up opportunity - not necessarily in the most conventional way. I’ve always been known for doing things unconventionally


Friday, 17 January 2020

Kairos moments, critical moments and freedom

Image description: upward view of book spines lined up in bookcases
Taken 27th November 2019
Dearest readers,

A few months ago I was at a fascinating Open Lecture up in London talking about human life, dignity and choice. An audio recording of the talk can be found here. I went in with an open mind, as per usual, not knowing what to expect or what exactly would be covered.

Simultaneously I have started a short teaching qualification for PhD students as part of my funding requirement this year. It is through reflection this afternoon I have found there is overlap in some of the ideas and topics covered in both the theological open lecture, and the teaching qualification I have had to do and the assessments it requires.

The concept of kairos moments - opportune moments for change - and critical moments which change or alter your experiences as a learner and impacting how you teach were where I have seen the overlap. Both can be described as 'critical moments'. I have had a variety of these throughout my life: many centred on realising the two way nature of interaction and the validity of my own lived experience. However one dimension I have failed to mention is how 'freeing' these critical moments can be when centred around the realisation of how we interact. These 'mini freedoms' as they are not just one off experiences, rather they are often incremental in the freedom experienced and have a constant re-realisation of the freedom. The reflections I have had on the teaching course are of course limited to examples surrounding teaching, however many still have this interactional backdrop to them.

Take for example a social interaction experience where there is consistent breakdown in understanding. Both parties keep misunderstanding each other. Both parties are known to each other - one a parent, one a child. But every time there is a misunderstanding, the child is told that 'they understood wrong', 'I didn't mean it that way', 'we are laughing with you' (when I am not laughing, therefore in my view the 'with' is pretty redundant) and 'but don't you see it my way'. The child has learnt that trying to explain their understanding is pretty pointless as it is not seemingly understood. The child realising that they are in fact, not wrong, when reading about validity of mutual breakdown and how different people can understand and process things, frees them from thinking that they in fact, wholly wrong.

Another example: the realisation that you were aiming in the wrong direction with your career, and that attempts to succeed were due to being taught to be a 'non-autistic' linguist, rather than culturally sensitive embodiment and living within these cultures. Very freeing to know that 'wrong' is an oversimplification for 'breakdown' which is mutually experienced.

The two examples are examples from my life. There are many others. But this, to me, signals that critical moments can lead to one's freedom from past expectations and restraints.


Sunday, 12 January 2020

A short piece on love

Image description: heavy grey clouds over a blue sky over the top two thirds of the image. The bottom third is a black shadow of roofs and trees.
Taken 12th January 2020

A few weeks ago I was watching Les Miserables on Netflix. I have always found the epilogue of Les Mis very moving. In particular this small snippet here:
To love another person
Is to see the face of God.
I personally see a lot of mileage in this, and a lot of beauty. It also shows depth to love, which is something I think we as humans can often misunderstand. We often only see it as superficial, feelings driven and nice. It’s actually not like this at all, and we are at risk of misinforming and falsely educating people - not just as individuals, but also the narratives in the media and deeply entrenched stereotypes and beliefs that can fly around a population at large.

I believe love to be a few things. It’s something we cannot quite often pin down, yet is so fundamental to our human condition. We write about it, sing about it in popular culture and commodify it through things we buy, it being written on the clothes we wear and being marketed at us on social media. It’s pervasive and it’s everywhere. We cannot escape it, it seems. But do we really understand what it actually is.

I’m not sure we ever can, but what the les mis lyric I shared does show is transcendance beyond what we can understand. I think as humans, we try and make things understandable and to place things into boxes a lot. Certainly in reference to me as an autistic person, I know we do this to autistic people a lot. We overgeneralise and try to understand through what little scaffolds we can grip onto. One example of this, is we assume all autistic people process sensory information in exactly the same manner, or we use our understanding of autism from an external perspective and blanket it onto everyone. I think we do the same to love. We can understand the superficial, but the much deeper and profound stuff is much harder to ascribe words to and to wrap our heads around. Can we even understand it completely from a human standpoint? Can we ever conceptualise it and describe it in a way that does not brutalise or hack parts off of what it is? I’m not sure myself.

Also if loving another person is to see the face of God, it also tells us about God and his deep love for us, if one wanted to take a faith and/or religious slant on this statement. It reminds me vaguely of Song of Songs in the Old Testament of the Bible and the intimacy shown in this book. It shows depth beyond the tangible and beyond human experience, but also how close this actually is too.


Thursday, 26 December 2019

Not just about autism, not just about me

a rectangle tray of biscuits shaped as Christmas trees and circles
Image description: a rectangle tray of biscuits shaped as Christmas trees and circles
Taken: 15th December 2019
Dearest readers,

I wanted to share a few thoughts today, just after Christmas, on something which has been bothering me for a while - over-compartmentalising of things. In English: placing people's experiences into separate boxes to the extent that we divide and over simplify experiences and concepts, in this case of inclusion and exclusion, labelling them purely by one aspect alone and missing the intersectional nature of experiences. Let me give you one example:

We don't want inclusion to be only about you, about autism. 

There's a lot wrong with the sentence above which misses various points. It firstly assumes my own positionality and views on how I understand inclusion and who it is for. Inclusion is a broad concept where active listening, action and reflection are part of an ongoing process, which can involve lots of smaller goals along the way. It is not a static entity. Inclusion is also not compartmentalised by cohort or group of people - my view is when we strive for inclusion we are embracing multiple groups of people from different lived experiences. This includes intersectional differences, for example the experience of a white disabled person is different to that of a black disabled person as a short example. We need to ensure inclusion is not unidimensional and only embedded in knowledge from cultural contexts and concepts local to us. This includes the knowledge of the communities we are in are cultures in themselves and can be very insular.

My view is what can be inclusive for an autistic person also benefits many other groups of people- albeit in differing ways and having perhaps a different function. The sentence above crassly ignores these subtle elements through assuming groups do not interact. This is in no way to say we are all a little autistic - we are not at all. Being autistic is a qualitatively different lived world. However the function of inclusive practice, e.g. what we might do, may it be a reasonable adjustment or a structural change - the same change can have different positives and open access in different ways. One example is providing a simplified agenda of a meeting can benefit people with a learning disability (through easyread), autistic people, people with dementia and people with other support needs. It is not just for 'one group of people'. Ensuring sound levels at a meeting, concert or church service can benefit those with hyperacusis (simplified - hyper sensitive hearing), autistic people and other neurodivergent people with sensory processing differences, deaf people (if T loop implicated in sound system, small d used here), some people with anxiety and those with chronic pain as a small selection of those who will benefit - as another example. Although autistic people have a different lived experiences, including us not only benefits us. It breaks my heart and simultaneously sets me on fire when people assume I'm only after including me - nada.

I wanted to share this image I created in playing with how I might try to explain the above. It's rudimentary so it does miss some nuance. My experience of exclusion is inside the wider experience of exclusion - but it is not all of it. I am a white, disabled, neurodivergent woman. There are experiences that lie outside my lived experience when considering intersectionality, However there are the two arrows showing the difference in function of the same exclusionary practices and behaviours (whether they are done intentionally or unintentionally - both happen) on me and other peoples. My inside circle will not be 100% the same, or the same size, as someone else's from a different cultural background, race or ethnicity, sexual orientation or gender. Autistic people are not the only people excluded - but we know from research that autistic people can have smaller social networks, poorer mental and physical health, be the victim of psycho-emotional disablism in varying contexts and die younger on average, therefore highlighting the systemic, institutional and wide spread nature of this exclusion.

a light blue circle with 'my experience of exclusion' written in it, inside a larger dark blue circle with 'others' experience of exclusion' written in it. Two white arrows pointing in and out of the light blue circle.
Image description: a light blue circle with 'my experience of exclusion' written in it, inside a larger dark blue circle with 'others' experience of exclusion' written in it. Two white arrows pointing in and out of the light blue circle.
Created by krysiawally on 26.12.19 using Canva

I wanted to share the above at Christmas time, as Christmas is the start of a narrative centred around inclusion, radical change and turning things upside down. Now is a good time to start - listen to those experiencing varying degrees of exclusion, and exemplify and uplift their voices. My dad wrote a good sermon on this - which I will link here when it is up. There is a power imbalance caused by lack of community and consensus understanding of such an imbalance. Power is something we don't 'see' quite a fair amount of the time in some contexts as we become either desensitised or are unaware. I believe we need to, as part of our push for inclusion, acknowledge its presence and goals and targets need to be sensitive to this.


Monday, 2 December 2019

Looking into the haze

Image description: a large big wheel side on, with a blue sign for the 'Wiener Riesenrad' (Vienna Big Wheel) at the bottom centre. Text of 'Wiener Riesenrad' in cursive white text.
Taken: 15th August 2015

Dearest readers,

I want to talk about what it's like to not be able to see yourself in the future, getting older, etc. I know I am not alone in this. I know this is not just an 'autistic' thing. I also think there are multiple reasons for this being a thing, and it's relatively complex, as many things are. It's strange when our society is so 'goal' and future driven, which hints towards a vision of a future self or a future lifestyle. I did speak about this briefly at the end of the last blog I wrote, but felt I could probably tease this out quite substantially.

When I say 'not being able to see myself in the future and getting old', I am referring to seeing a mental image of myself in years to come and seeing the context surrounding it. I think this is something that quite a few people experience.

There are a few reasons for this: one being how rapidly the context around us is changing in today's society. What might have once been a static expectation is now not only much less rigid and stable, but also much more fluid in how it might look. Societal pressures and dynamics change, and in our current postmodern era, I do believe that we are in a currently exuberant level of change and shifting about. Technological developments are one area in which the fast pace can be observed, and perhaps one which is quite obvious to many of us: would we have considered having a smart phone which can do all it can do at this point in our lives? Mine can do emails (work and personal), texts, phone calls, photographs, augmented alternative communication (AAC) apps, a bubble shooter game and access to various online drives I have. I see my phone as an AAC in itself that has helped me to be able to communicate in a way best for me as an autistic person, with friends, family and colleagues. I could have never foreseen that.

Changing and shifting expectations are also a part of this too. What people do at certain times in their lives is shifting against previously established ideas. Also, the concept of the 'who', the who does this sort of thing. An openly autistic researcher is not something, or rather someone, who would have been entertained to be valuable, have passion for the role and have something valued to contribute, until not that long ago. We are no where near a clean and equitable access for autistic people into the workplace, by the way, I just need to add that in. There is still a very long way to go. However, what i do think is there has been change, and we need to keep the momentum going. I always knew when younger, that the job I'd do didn't exist then, whatever it might be.

Another part of shifting expectations is the pushing against social constructs, effectively being seen as 'limits' in some ways, but also categories which might not allow for intersectionality, fluidity and sitting across multiple boxes, a little like the image of flubber I currently have in mind. People don't fit into boxes, although acknowledgement of alignment to groups, communities or ideas are useful in terms of identity and self-knowledge.

I think, or so for me anyway, I am always surprised that each year I am still here. I would say I think I am odd in thinking this, but I'm not so sure. As well as the above of changes and shifts, there is furthermore the idea of not seeing yourself in the future full stop, in any capacity. It feels like walking into the unknown, with no path there. It also feels like uncertain and unclear. You could say it is a lack of goals or ideas, or is it that I have removed myself from normative expectations and time schedules, so that I can enjoy, share and focus apart from what the world wants. I could take this on a spiritual tone - I don't think God is bound by normativeness. I could also take this on a self determination and autonomy not necessarily matching up with normativity.

This opens the whole question of normativity on both accounts. Maybe I need to play with them at some point...


Saturday, 30 November 2019

What does it mean to live?

Image description: some graffiti written on a wall in French. In English it reads 'all men die, but only some live'.
Taken 7th March 2016

Dearest readers,

I took the above photograph on a day trip to Paris a few years back. I remember it striking me with the words: all men die but only some live. It was only graffiti seen for a short period of time, however it being immortalised through the above photograph. The depth of it struck me, especially that of the latter half of the quote. Only some live - in what way? What does this mean? What does it look like and mean to live, to have life?

I think some of these questions are very big. I don't expect everyone to have a uniform answer on then. What I do expect though, is for the answers to be personal to each person, and to be informed by their own lived experiences, priorities and values.

I was at a conference on Thursday where I sat in on a presentation on supporting people with a learning disability to 'grow old well' - and in this presentation it involved reflection on what it meant to 'grow old' for us. I spoke to a nice person next to me - I didn't catch her job role or why she was there. But we did have a short and fascinating conversation. I don't think she was quite ready for my answer of 'what do you think of when you think of growing older?' It just came to me. I also must note I don't normally talk to people I don't know at conferences, as I am socially awkward, shy and feel an immense amount of pressure to do so, resulting in nothing coming out.

My answer? What is inside doesn't grow old. Our bodies might age, but souls are timeless. Growing old also hints towards a more linear view of life, where we might be inevitably looking for decline rather than change, growth or development. She didn't have much to respond to me, I don't think she was expecting that.

This also inherently links to the idea of what is life in my view. True life is what nurtures the soul - or our innateness of who we are. It's complex, it's not categorisable and it cannot be reduced without hacking parts of it off, or distorting it beyond recognition. We try, as humans, to do the above a lot it seems. We do this to a lot of things actually. Our lack of sensitivity when conceptualising things within our merely human capacity will always inevitably lead to distortion or disruption of some kind.

The actual things which are important in life are intangible in nature. They again will differ per our values, life experience and personal priorities. It is not only useless to provide a sweeping generalisation of what these might be, but there are likely to be overlap in the significance of their importance and centrality to that person's life. What I can say is plugging your life with materialism often does not result in the feeding of the soul, well for me anyway that is the case.

The age old addle of 'being' vs 'doing' is also central to this I believe. If we are always so busy doing, will we miss the subtle yet pervasive fulfilment of being? In the long run, which one is actually more important? And what do being and doing actually look like? I mean I certainly am not someone to sit still at the top of a mountain, we all know this.

I also think living has a lot to do with fear. When I was in a bad place last year and felt like one person against the world, these words came to me:
If you know you are walking to your death, why then are you so scared of dying?
To live is to strip back barriers. It is to be authentic, it is to have connections, it is to share. I refuse to brush fear under the carpet now - it can come along with me and be part of the lived experience I have. For to 'love' (e.g. care, share, support - I see it as the practical things) is to be vulnerable, however that might be, and being vulnerable requires being authentic. Being authentic means knowing what it means to 'be' you.

On a side note of what it means to live, I've never seen myself getting old... is it because I won't get there? Is it because I don't know where I will go, and am open minded? Is it because I don't have a plan? Is it because when I chose my belief system, I handed over the ideas I had, which were actively harming me, and loosened my grip on 'normative' life and expectations? I never saw myself as a 28 year old as a child, I never saw myself doing what I am. I'm not scared.


Thursday, 28 November 2019

Acquiescence and communication

Image description: blue sky with a pier facing outward onto a lake. A boat is moored to the right. Some trees are on a bank behind the boat.
Taken in Hamburg, 23 May 2017
Dearest readers,

I've written about my experience with acquiescence, communication and power before. Some examples are here and here. There's always room for more though, especially when we consider how much of our human condition is embroiled in a communicative nature as an 'apparently social species'. I say 'apparently', not because I am selectively social, can lack the energy to socialise or am a bit foot in mouth from time to time. I say 'apparently' as a comment on the blend of prosocial and antisocial actions we do as humans, and how this can influence our perception of other people, and how in common speak 'it takes two to tango'.

Communication is never merely one sided, in my view. Maybe I asserted that a bit strongly, and certainly if I was making this claim in an academic context, I would need to be more careful. But my space, my rules...

I personally see communication as a collaborative act between at least 2 people. As I said before, it does literally take two to tango. Whether we are always aware that we are a communicative partner though... perhaps we are not. We create a communication environment between those of us partaking in that act at that time - if it is done right and 'fits' the parties well that is. I personally see acquiescence in this way as part of a communication breakdown - where there is not one uniform 'act' which is collaborative in the nature of being fitting the same purpose for all and messages being understood as intended. Acquiescence can lead to unintentional message transmission - it's message transmission under pressure in one way. Much like steam escaping from a pressure cooker, it is a message which is forced out, and these 'forced out' messages disrupt a collaborative act which is held together merely in the moment.

That's another crucial way in which I conceptualise communication - as dynamic, rather than static. Is it ever stable? I think that we oversee how dynamic and fragile such a state can be. We can take for granted that the communicative environment can be stable in the sense that there is a good match between communicative partners. I don't think it's as simplistic to say all people like x or y will immediately be a good match in terms of a communicative environment. However, what I can say is it might make a good match more likely - when we consider communication styles, preferences, personality and approach to how we interact with each other.

Also if we have experienced a lot of communication breakdown in our past, we may well be primed to expect a collaborative environment that does not work. My view again - if it doesn't work for one party, it doesn't work full stop, due to the inherent collaborative nature.

Acquiescence is a pain - I've said that before. It can be the result of a dynamic communicative environment where boundaries are infringed; where processing speeds are delayed; where power differentials may not have been accounted for; where fear plays a role in message transmission... these are but a few examples. If we can release the pressure on that steam cooker, perhaps some balance in the balancing act which is a 'collaborative communication environment' can be somewhat restored or at least, shifted about to change the transmission of acquiesced messages.

I also think acquiescence does not stop with the words we use. We can acquiesce as well through other communicative means, and through how they are understood by others. It is vital we consider acquiescence not to be merely limited to verbal communication - as it is not only words through which we communicate.

Maybe I will add a few more thoughts in the future, but I'm running out of steam...


Booklet review: the Upside Down Kingdom of Heaven

Image description: a barn with windows covered in wooden paintings in bright colours in Bratislava Taken: 16th August 2015 Dearest re...

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