Saturday, 8 December 2018

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 Dumbledore to Newt Scamander in the Crimes of Grindelwald 


Dearest readers,

I really like the above quote. Out of the whole film from The Crimes of Grindelwald (from which I will give no spoilers, because I might not be the most popular person on the planet if I give spoilers out...), this was by far the one that stood out the most to me. I see so much of Newt in myself, even though when I was sorted on Pottermore I ended up in Gryffindor.

I see the above as so relevant to me for so many reasons. It has always really bothered me about doing things which are ethically and morally right. Recently, it has bothered me how charities can have disabled people work for them, and think they are doing a great thing, yet still fund raise for causes which communities of disabled people are categorically against and distressed by. I become very distressed at upsetting people, possibly in part because I have no idea what to do when people become very upset and literally become overloaded. But there is also this part of me that has a huge conscience. I have had people make assumptions about me in the part: that I don't care, that I cannot possibly care because I don't have feelings, that autistic people do not and cannot have the capacity for this.

Well firstly what a huge overgeneralisation towards a minority you made, which is not only rather callus, but very much places you in a highly assumptive position where you are judging from your own observations and epistemology alone! (Phew, that was a rather long sentence...)

This obviously isn't just in regard to individual person's feelings, but also the wider cause for humanity and human rights. I cannot have tolerance for quack and abusive therapies and abuse hurled at autistic people. I cannot sit back and universal credit to systemically deprive disabled people and push us further into poverty. I cannot fathom a world which thinks it is permissible to families and young children being gassed at the American border.

For me, it's not taking a side. It's doing what is right, required and of the upmost necessity. The world is not made of 'sides'. If the world consisted of arguments where all debates only had two sides, the world would be a much simpler place. No, sides are for shapes and lines, not for humans.  What's right isn't a side, it is the stance that needs to be taken - perhaps why I prefer the word "stance" to "side". A stance is much more nuanced in nature, yet I feel the word "side" implies everyone who takes that "side" has complete agreement with that point. A stance is more individualised and allows for our personal life experience to pierce through. It allows allies to stand with us. It also allows for multiple stances to be taken.

Power is something that has always made me very uncomfortable. I hate being in the limelight - I do enjoy my privacy. I also think, certainly in terms of academia, that those who have power do not realise that they have it. It is when we are faced with power dynamics where we are imbalanced in the negative that it can be the most obvious. I'd hate to one day to be so ignorant to my own positionality (who I am, the status I have, my background, etc etc) that I was exploiting others through my own power. I guess this can give away some of my personality, as well as a political stance. I have always been uncomfortable with humanity's equation of achieving ambitions with achieving power in many (but not all) instances.

The way in which our society is set up requires power for people to get heard - which is the ultimate demonstration of how far power dynamics are rooted into our current social structure. This is not a critique of it as such, as I cannot provide a better alternative quite frankly, but rather an observation.

Maybe a few more of us need to think if things are right before doing them, and to listen to voices which are near silenced by power dynamics... or maybe just be more reflective on who we are and what position we hold in the world? Reflection is a skill we can learn, if we wish ourselves to.

bw
-krysiawally x

Image description: birds eye view of pebbles on a beach
Taken 6 May 2013

Thursday, 6 December 2018

Researching autism as an autistic

Image description: Frauenkirche (Our Lady Church) and the Martin Luther statue in Dresden
Taken 20.09.2014
Dearest readers,

I wanted to share the outline of a presentation I did for a university society at the beginning of December. Given the unique (yet also not so unique) position of me being an autistic researching autism, and it being Disability History Month, I thought on a disability presentation night it would be a good contribution to make. I actually intersect my research in two ways - one further way if you include being autistic as one intersection. If you read the post 'Bias? Why we need lived experience to guide research priorities', I go into this in much more detail.

Enjoy the presentation write up! It's relatively short, so much more content and analysis could be given, but given the audience I thought this length was appropriate. This is also not a word for word recount of the content I presented, as I do not like being too scripted in my presentation style (I used to stun peers during my languages degree doing this - I can't be doing with 'reading off a sheet of paper').

bw
-krysiawally x



Being an autistic researching autism

I think a good place for me to start is introducing myself. My research area is exploring autism in differing faith communities. Interestingly, I have neither a psychology, nor a sociology background. Many people assume I did a degree in psychology when I tell them what I do. I firstly trained as a linguist (German and French), and after a few failed jobs that I realised did not fit me, and were slowly killing and breaking me, and too many failed job applications, I went and spoke to my former disability advisor from my university. It was his suggestion...: 'Krysia, have you ever considered doing a masters in autism?' At that point, I was completely against the idea of further study through doing a masters. But this felt different. So thanks to him, I managed to talk my way onto the masters course I did and found the field of autism and faith communities I am so passionate about.

Considering my experience as an autistic researching autism, here are the four key areas I have broken them up into:
  • barriers faced
  • emotional labour
  • being an unintentional activist
  • questions of identity

Image description: the four areas I conceptualised impacting my experience as a researcher
1. Barriers faced, 2. Emotional labour and myths, 3. Being an unintentional activist, 4. Questions of identity

(c) krysiawally, 3rd December 2018 for UKC FemSoc

I will take each area in turn and delve into some of the issues and complexities that arise under each area. I could say much more under each part, but will stick to key parts in my experience: 

Barriers faced
Communication and expectation differences can lead to misunderstandings from mentors and colleagues, as we, as autistics, do communicate in a different manner and the communication of expectations is part of this. The viva is one massive fear of mine, given the level of grilling and amount of non-verbal communication that occurs in oral exams, when you could whack me round the back of the head with metaphorical non-verbal cues and I'd totally not notice. I personally am quite scared of the majority of people as I really do not trust anyone. I guess this also links into the next point: academia has an incredibly interpretative and subjective nature, given the huge role of peer review as a means of quality control and that others might bring unconscious biases unintentionally. In a field where communication of a certain type might be misunderstood, paired with the subjective nature of academia, does not always bode well.

Not everyone wants to tell others they are autistic: it is massively stigmatising (when I'm of the opinion it should not be). I am lucky in that I do have supportive supervisors, however it can be pot luck. As I have mentioned before (and will do again), the university system is not always the most flexible to the needs of disabled and/or neurodivergent students... Reasonable adjustments might not always be what is necessary or sufficient in some cases - rather what it actually thought as necessary or cost effective. There's also the thing of different people having a different view of what is 'reasonable', and also that I know from my own experience I have no idea of some reasonable adjustments I could have asked for.

Emotional labour
There are various myths that exist regarding autism and autistic people, of which some in academia seem to be down to autistic people to overturn and challenge, leading to emotional labour (having to point out the obvious to you). There's these recurrent ones that linger in academia of autistic people as white-het-cis male, therefore as a homogenous group. Pfft. The representation of autistics is often incomplete and fragmented, and some demographics missed or neglected, for various reasons (recruitment can be difficult, as any researcher or student including myself can tell you, but sometimes we don't think outside the box enough or are too constrained by these things called time or money - all poor excuses). 

I also have an issue with defining people on contribution to society alone through the usage of 'functioning labels', as they harp back to eugenics (quantifying who is worthy of life through their value to society). Through us using these labels as researchers, we reinforce wider society's usage of these terms. I completely get how difficult autism is to define, but we really need to take a stock check where the terminology we use comes from and what connotations it has. (Maybe this leads onto us reapproaching how we define autism?) Linked to eugenics, the currency that ABA (applied behaviour analysis) has in the behavioural research community and teaching in autism at some universities. I will leave ABA to another blog another time, given it's problematic nature, questions of power dynamics and poor study quality, however I feel my stance, both academically and personally, is quite clear.

Being an unintentional activist
For some people, just being faced with an autistic face to face as an academic peer can confront their perception of autism and autistic people. Often we are seen as 'people who are researched on', not those who 'do credible research' or 'sit face to face with researchers as equals'. Some only see autistic people as children, or those in supported living, or the stereotype of white-cis-het-male who can't xyz. This can be said for some academics and policy makers, where autistic and other groups may not always be a part of the policy making process, rather what is deemed appropriate at that time and moment, with no input from said groups. Just from being present and demanding equity among some individuals is challenging and potentially uncomfortable, and that's just the act of being a researcher, let alone the ideology you might have or your research topic.

Questions of identity
There are various questions surrounding identity that can be opened through study of a topic that brushes so close to you that it is a part of you. Here are the three I thought of while planning:

  • My identity vs. society’s perception of autistic people 
  • My identity vs. prevalent academic understanding of autism
  • My identity vs. broader autistic identity in the autistic community
Finding where I fit in all of this and my own position on things, rather than just aimlessly following any particular group, leads to further critiquing and finding out what I actually think and believe about things. (Looking to the group I was presenting with --) I can say each one of us has had to discover who we actually are and have all been on a journey. I add, for me at least, it is not only the reading and critiquing of academic literature that has formed an important part of my journey, but also meeting other autistic academics, students and well-read people and our allies. I love to listen and question why people think the way they do. Since our voice is not always so present in the world of research, conversation and discussion has been a way to find some of the debate and encouragement I have craved. 

Sunday, 2 December 2018

Guest post on an #actuallyautistic resource

Dearest readers,

I have been busy and have a guest post at a fellow #actuallyautistic blog and resource: SYA? (So you think you're autistic?).

This online resource has been created by two fellow PhD students I know to support a group they run for university students.

Linked here is my contribution. It's a bit more concrete and practically focussed than my normal abstract, conceptual and theory bound posts, so should be a bit easier to follow as it's not just my thoughts running off the page at a million miles an hour!

I can only thank Chloe and Annette for accepting the piece and look forward to writing for them and SYA? again in the near future!

bw
-krysiawally x





Saturday, 24 November 2018

What churches need to learn about autism

Dearest readers,

I wrote the below piece for a magazine a while back, which fell off my radar. It's only 400 words, I remember cutting it down from 600... ! I was asked to write this piece as part of the theme of 'learning'. Learning is not something that we'd associate with autism in terms of altering how we perceive people - as equal, worthy of respect and equally in God's image (see below). Rather, we like to petter autistic people in pity and charity without actually considering the systemic issues that might lead to exclusion, challenge or internalised conflict for the autistic person i.e. feelings of failure. 

For somewhere that so proudly calls itself 'inclusive' and 'all welcoming', the fact I had to be asked to write this, along with my own personal experience, shows that some faith spaces are clearly not as 'all welcoming' as they perceive themselves to be. How intersectional is your welcome? Is it that we need to deconstruct the ideas of 'church' and 'worship' and what we do, to better reach people? Why is understanding so idiosyncratic? 

We should not be scared that we need to improve our welcome or inclusion. It should, and ought to, be seen as an opportunity to engage and bring down power divides, if done properly. 

bw
-krysiawally x 


Krysia is an autistic PhD researcher exploring autism and faith communities. Here are some of her thoughts on what churches need to learn about autism.

Autistic people can be spiritual

There is this myth that autistic people do not have feelings or cannot be spiritual. This is a gross misunderstanding, as autistic people are human! Because autistic people, regardless of their support needs, can wish to join a church and worship, it is vital this myth is laid to rest.


Autistic people reflect another part of God’s creation and are just as loved by God

Remember Galatians 3:22: ‘There is no longer Jew or Greek, there is no longer slave or free, there is no longer male and female; for all of you are one in Christ Jesus.’ This means we are all eligible for Jesus’ love. Also remember God made humans in his own image - as said in Genesis; therefore we are all, including autistic people, made in God’s image. This actually goes much further than ‘just autistic people’.


Barriers we might and do put up, making church and church life more challenging for autistic people

I define autism as: ‘a neurological difference meaning the individual perceives the world differently, including senses and communication’. Processing the world differently can mean we meet barriers, for example sensory input (i.e. noise levels) and different communication needs. Our attitudes towards others makes a part of how we come together as a faith community, how we worship and how we show God’s love.


Engaging with autistic people is part of our mission and responsibility
If we say ‘all are welcome’ in our signage, then we need to ensure we follow through. Some of the best people to guide us in our ‘inclusive’ practice are those who experience the world differently. Referring to the title above, this means church groups need enter dialogue with autistic people.

Also, please want to include us. Engage with us not to tick an ‘equality and diversity’ tickbox, but to actually listen to what we have to say. We are told to ‘love one another’ - listening and reflecting on what barriers we put up is part of loving one another.

Friday, 23 November 2018

Bias? Why we need lived experience to guide research priorities

Image: the Norwegian Church in Cardiff Bay at sunset
Taken December 2015 

Dearest readers,

I'm back. I've wanted to use the above photo for a blog for a good six months now... I have just never found the fitting post to pair it with. This was taken at a time I had a lot of free time on my hands so thought a day trip to Cardiff was a good idea. Yes, you heard it, I got the coach to Cardiff and back in a day... I live the other side of the UK to Cardiff horizontally, so getting a coach there and back is a pretty feat.

I'd also never been to Wales before this impromptu visit. This was definitely one of the highlights. Didn't go in though, because as anyone knows who knows me, I'm chronically anxious and getting into buildings and rooms is a challenge.

It seems quite fitting to have a picture of a church when talking about bias anyway. A sort of good tangent into what I actually want to discuss. This can be taken from many perspectives, however I guess you could see two of may main 'interests' in academia land are also two whacking great filters things need to go through. They're funnily enough, why I do what I do: the ableist practice, tokenistic 'hmhm' and lack of action have given me passion to fuel a reason of why this needs to be done. I am nothing but critical and in search of what is actually going on. I want to know, I'm interested.

My two main filters? I'm autistic and a Christian.

Yeah, not particularly the least stigmatising filters, that do not necessarily go in my favour. Especially when we think of some of the embroils the church have been in in the media with various things and the sort of reputation some evangelical Christians, and how heterogeneous Christians are (that we tend to disagree on things more than agree and come from a wide variety of walks of life and cultures/traditions). Get to know me, you'll know I couldn't be in starker contrast to the sort that follow Trump and I'm very much aligned with liberation theology (and how that intersects with neurodiversity and disability). I'm your standard snowflake. I'm not into Bible-bashing people and like to hear people out first - maybe because I've heard one too many sermons about how being autistic is such an abomination and I'm broken because of it.

Yes, that's right. The preaching on disability/difference/neurodiversity I've heard has been interesting, to say the least. Not to say I want to reinvent the wheel, rather just be respected and taken seriously.

Also worth me putting my tuppence in about that puzzle symbol used frequently... here linked are a few of my thoughts (I think it's an insult, quite frankly, to God, saying he's made broken people, as well as to autistic people, ya know... as well as A$ using it).

I was in denial about being autistic for 24 years. Only found out at 13. No good resources, no support in education and no access to 'autistic space', nor the knowledge that autistic lived experience is quite unique. A bit like I've said in 'Four reasons we're not all "a little bit autistic"'. A smattered history of mental ill health, just brushed under as 'oh, you're autistic' and brushed off.  Much like many autistic people, I've been thinking, listening, talking (with speech or typing or otherwise) and uncovering. I've had the absolute privilege of doing a masters alongside this. I've not just learnt about myself, but about humanity and society on a much wider general and what a mixed bag we all really are. I've learnt saying uncomfortable things are needed and necessary to challenge others and their way of thinking, and to be interested in finding out why people think they do.

These filters - part of who I am - are part of the reasons I do my research. But how can it be 'proper' research, and done without me using it as an axis to grind? Good question, yet also one that if said in a leading manner by your own unconscious bias against autistic people, or people of any faith, is a dangerous one to ask. You need to think why you are asking that question. For it is not only me who might have a life experience that highlights something that needs exploring.

For coming from a place of being trampled on, of a place where I have felt the repercussions and had to do the 'emotional labour', I know marginalised communities and individuals need desperate representation from such communities. I'm not the only autistic person I know, nor disabled person, who has struggled with church, or faith communities. I also know it is not just autistic people who can find faith communities challenging, as no one group sits in a silo (meaning group here) of its own without intersections from other groups. This is just the tip of the iceberg.

Quite literally, the tip of the iceberg. How many dimensions shall I care to describe?

This thing of 'proper research' flies around in the debate of quantitative (numbers) vs. qualitative (words, interviews) too. How can something where the researcher is a tool (i.e. an interviewer in an interview) be really objective, replicable and in essence, 'real' research?

This is why we make research accountable through a thorough methodology and properly explaining what we did; with honesty, integrity and accountability. 

My counter questioning would be this: how do you expect to get real voices into numbers? How do you propose finding areas of relevance to people, real people and therefore real life, if exploratory studies of an exploratory nature are not carried out? Is research for you, just about your credos and reputation, or do you actually want to help actual, real people? Where do your ethics lie? I know there is this little thing called money which can and does restrict what we do, however there is this niggling little thing that likes me to ask awkward questions. This is not to say I'm always right either.

And interviews or qualitative research is not always appropriate to what we actually want to find out, let's bear that in mind.

And looking at people's intention to research - shouldn't we address who we think our idea of a good researcher is? Does having distance provide the passion? Does it shows skill and fortitude to be able to study something so close to you, yet to do so in a manner with such integrity and reflexivity considering your own beliefs and epistemology?

I think it is.

We need people guided by lived experience of things to tell us what is worth pursuing, and what matters. It's this thing of power, again. We know this in autism, as one example: various self-reports from autistic people tell us so. We also know from the Office of National Statistics that many do report as having some sort of spiritual side, many of these belief systems incorporating an importance on community and people coming together to support each other. 

Let's practice what we preach and not stigmatise and tar people with assumptions - address our unconscious bias, however practiced we are, for it is a muscle we need to exercise frequently. We need to address power differentials through reflecting where we are in comparison to others and we need to realise we might not always be right.

Plenty of times I have been wrong or mistaken and I'm still learning.

bw
-krysiawally

Monday, 19 November 2018

Hands off my mental health - why I am doing this

Dearest readers,

Long time, no write.

Explanation? I've been unwell. This was one of the first things to drop as I needed to make space to deal with 'stuff'. Reality is, I've been unwell for between 9 months to a year, and I'm fed up because apart from my lumbar spine hurting a bit, I'm physically fit with a brain that is tricking me. and distorting everything. It has been non stop. I'm fed up. I'm fed up with the notion of 'I can keep going because I look okay' and 'everyone else does'. I haven't even been paid for the luxury! I've lost time over the last year and now having to mop up the mess. In light of this, academia needs a long, hard look at itself to contemplate ableist structures that have been built up over the years, etc etc, yadda yadda.

(Yeah like it will, it'll take overworked and under appreciated academics to bring this up, on top of the massive workload they have.)

Abridged and redacted, of course.

Obviously this is not a blanket accusation, rather more an expression of frustration.

Anyway. Rant over. (Sure I'm not alone in this sentiments above.)

I've started some daily posts - 'hands off my mental health' coined posts and I want here, rather than to share the content of them, to explain why I am doing this. I also want to get back in the habit of writing again for fun, and to enjoy what I create. I've had all my zest for writing drained and seemingly robbed over the last 2 months; I am determined to get it back (irrelevant of how many hits I get). Before 2 months ago, I was writing, but not at my best.

Through chronicling my journey, I want to create a pseudo-trail which I can look back on. Putting into words and releasing it in a constructive way is needed. I want to show my voice and my story and place agency back with myself. As I have said before, I don't see myself as 'resilient', rather having fortitude as I see resilience as rather passive and just bracing whatever is thrown your way.

I want to make myself accountable to my journey through reminding myself what I have done to help myself and to create good 'work hygiene'. I want to be able to look back and know that 'this too shall pass' when I do not see it passing.

I want to have the freedom to express and share without feeling guilty, as this is not a blame game, rather a means of self-expression to move forwards and heal. Hence no names, no jabbing and no pointing of fingers. As far as I am concerned, that will make me even more bitter and distort the way I see things even further. This creates a safe space.

I will be back soon with actual content relevant to my strapline! Hold tight!

bw
-krysiawally x

Taken 19.11.2018
Black trainer shoes on concrete with red, yellow and orange leaves on grass. 

Sunday, 23 September 2018

Church language - is it jargon?

Image description: a rainbow over a spire in Leeds
Taken 14.02.2016
Dearest readers,

A thought I've had. I do like thoughts, although sometimes it can feel like I am asking awkward questions and stirring. I guess this is mainly in part due to the number of thoughts I have and how 'radical' some of them feel. But I think this question does need to be posed... in fact, a similar line could be taken with many communities and community groups: is the language we used understood and accessible? I take churches here as one example as I know there is very specific language and vocabulary we can use, and do use, can be somewhat exclusionary and exclusive (in spite of some intention for it not to be). I've grown up in a variety of churches, so I've seen when people communicate well and not so well. I know some of the words and language that gets thrown around and that is specific. I have also seen this language discussed and examined by those who are not part of such faith groups or communities. I also have a faith too - I'm in a dual position of being an insider yet acutely feeling like an outsider. Sometimes we use these words and either get others lost, or they just switch off.

Google defines jargon as:
special words or expressions used by a profession or group that are difficult for others to understand
This is a short and sweet way of saying 'not using words that are used by everyone and understood by everyone', which is the core of 'easyread' and 'plain English'. A short article on easyread is linked here for readers who are new to the term easyread.

I'd openly challenge, in a positive way, for us to use words that do not leave others confused or switch people off. I mean, do we even all have the same way of defining some of these words, as many of them (e.g. grace, mercy) are incredibly abstract. Could we define them in a way which could be understood by those outside of the confines of that community? If a goal is to reach people, surely that needs to be in a manner which is understandable, non-threatening and where the communication dynamic is not only thrown in one direction? I am very much in 'team Double Empathy problem' (conceptualised by a colleague, so credit to him linked), where the who interactional nature of communication is examined rather than just how one party understands and interprets information (like 'team Theory of Mind'). Even though these are autism theories, maybe we need to look at these ideas in a broader communication context to illustrate the truly interactional nature of how we all communicate with other, and therefore the words we use between, within and outside of communities.

I think also, examining this allows us to see what we deem to be 'communication' for ourselves and society at large.

'Fellowship' is another word that sort of bothers me, due to how often it gets thrown around yet in a way that is used in quite a specialist manner. Are we all referring to the same thing? Are we just using it to refer to something we could use a 'plain English' alternative to, like for example, meeting up, or meeting together with a specific purpose and goal? I know it doesn't sound as special, but surely that would be less likely to cause confusion. I know I have been confused by these sorts of words many times, and not 'just because I can take things literally' as an autistic (in my opinion, another proponent of the Double Empathy Problem and a breakdown in communication needs).

I think we need to have a close look at the language our communities use and consider if this language renders it 'accessible/inclusive'. I get the feeling we get stuck in our ways and don't see how we look from the outside. I also think that we don't think complete inclusion and accessibility is possible, so kid ourselves that we shouldn't pride one groups access over another or by thinking it's too hard, so stumble and falter in our action to do anything and don't talk to those who we ought to be, so letting even more people down in the process. Then there's also the thing of wanting others to act, but doing anything ourselves sometimes as 'too difficult'.

I would like to openly challenge us all in our faith communities to use 'plain English' and to explain our 'buzz words'. If we are to show love, the key of many faith communities of various religious backgrounds, we need to meet people where they are at and that includes the language we use.

bw
-krysiawally x

Saturday, 22 September 2018

The ebb and flow of information: a privilege of access? Or just how the world works?

Image description: a push bike against two small pillars at the bottom of Steep Hill in Lincoln.
Taken: April 2016
Dearest readers,

Something I have been starting to think about. It caught me on the train on the way back from work a few days ago:

Is having access to information, via discussion, the internet & social media and other means, a privilege?

Given I have just asked a yes/no question for a blog post longer than one word, maybe I ought to elaborate. In all due reality, there is an explanation that can be given when answering the above question. Maybe we should ask instead why it could or would be a privilege, not only to have financial and economic privilege to access technology, but also to know people who can connect you up in the right places at the right time. Our world works through knowing people who know people. Apart from hard graft of getting yourself into a place (physical or metaphorical space), there is also the notion of being able to get through the door of such a space and to be continued to be accepted into such a space at play.

What I will mention is being able to be 'yourself', and prior to that, find 'yourself', ought to be a right that we are all entitled to. It is, however, not something we all have a safe space, nor the opportunity for.

Firstly there's the grapple of information being behind a pay wall, for example journal articles. If you know me, you will know I am very pro 'open access' and not barricading people from information on either a monetary or an alliance basis. By alliance basis, I mean by being employed by, or studying at, somewhere that does have access. Obviously there is still a cost, usually in form of fees (in the case of students). But these are both things that many are restricted from. Obviously it's not going to be the flick of a switch to undo paywalls, but I do think it is a discussion and debate that needs to occur, and that in fact is occurring through some media.

I think many of us also forget that not everyone does have social media (like we may not have access to other information sources), either through choice or limit of access through other means, like no access to internet or computer/smart phone. Having social media is not a given and is a personal choice, even down to if you have it, which forms you use. We should never assume automatic access to such a medium. This notion of access can further complicate the value of social media in information creation and development: how can an information source ever be truly representative of the multitude of voices if some are missing? This is not to say it is not valuable - because it is. But what it is not, is complete. Certainly in the case of Twitter in particular, I know many who find it too fast, too demanding, too public, too cliquey, too personal among other things I have not mentioned. Do we also need to look at personal attitude towards social media and personality to see how groups interact on social media? I'm sure people have. I am no expert on that. But what I do see is social groups operating to some degree.

There's then the thing with which information is counted as valid, which I have looked at a bit here and here. Yes, it is in reference to research topics, but the same phenomenon is likely to occur, and I know of instances where it does and has.

There is also this thing of people knowing things on a need to know basis and information spreading by word of mouth and networking... now I think traditional networking where we all have to sit in a room and make small talk at the end of a conference horrendously discriminatory (ableist), as I for one, cannot do that. And not just out of me being awkward. People don't know my communication style, I'm often overloaded by then and I just plain intimidate people with how passionate/ direct I am. Having access to boards and being in positions of 'power' is a privilege too, we must not forget that. Certainly in churches, with me being, and identifying as a woman (shock horror), young, disabled and not connected up to some board, committee or high impact group somewhere via people I know (and however many people I network with) - it needs to be considered if voices are not only getting heard (so information spreading one direction), but also these committees and groups getting heard of and being accessible (so information two ways). I believe this to be a bit of a bidirectional breakdown and this needs addressing in terms of engagement, representation and how information is circulated, most importantly, on a much broader term.

(Also different stakeholders have different views anyway, so no guarantee or being listened to/taken seriously!)

Many questions to ponder here... many ones with not so simple answers, but rather things we can think about.

bw
-krysiawally x

ps yes, I did climb Steep Hill and I did reach the top... with struggle.

Friday, 21 September 2018

Are we willing?


You think the only people who are people
Are the people who look and think like you
But if you walk the footsteps of a stranger
You'll learn things you never knew, you never knew

from Colours of the Wind by Judy Kuhn 


Dearest readers,

A short one today.  I wonder how many of us are guilty of assuming similarity with others. At work on Thursday, I had Disney tracks on repeat all through my iTunes and it struck me how this section here is just so relevant to so many of us. It's been a while since I've written - I keep starting posts but where I have been caught up with other things, they have been left half finished and I then forget what tangent I was on. I think this is a timeless tangent though. 

Although the piece above is from a film, the film was based off recorded events (and their fidelity to such events is questionable in this case), these words are much broader in their scope than differing cultures, ethnicities and lifestyles (as well as various traditions and power dynamics). I can see it being relevant at the judgement of autistic people passed by non-autistic people - alluding to our life experiences and how what we experience and how we experience it being intrinsic to how we make sense of the world. This also sheds light on the role 'knowledge' plays in making sense of things, and throws the question out there of what composes our knowledge. That in itself, is a whole different and separate post I would need to do...

Furthermore, our willingness to be open and to learn from others is paramount. How do we define being open though, and being willing to learn? I think sometimes people say they are open, when in fact they are not. Or people say they are open, but do not necessarily have the same definition of what it means to 'be open' or 'have an open mind' as the next person. It's a personal thing. We cannot force openness onto someone, as it is a barrier or filter only they can let down. I don't think someone should be 'forced' to have an open mind, as that defeats the point of critical thinking and wanting to understand others. However, people do need to be challenged, and that is something else entirely. I also believe you can be very open with one thing, but very closed and rigid with other things. It's not an all or nothing scenario, rather an intricate switchboard of switches. 

The point of this post? To show that different experiences of life are not only experienced by autistic people but also that autism intersections with many things. To also raise the question of how open minded we actually are. I'm not passing judgement, because I do not know who is reading this or what opinions or beliefs they hold. But what I do know if you've probably clicked on a link to reach this and may already know I'm not perfect. Rather, I'm posing awkward questions to dig around at who we actually are, what makes who we are and to try to figure out why people believe the things they do. I'm innately curious. 

Maybe this might lead to a few 'light bulb' moments, for me or for others? Who knows. 

bw 
-krysiawally

Wednesday, 5 September 2018

Shaping our beliefs

Image description: trees on Thorne Moors in the sun
Taken: 02.09.2018
Dearest readers,

A short, but abstract and meaty one today.

A small question to start us off: why do we hold the beliefs we do? Of course, beliefs are quite wide in definition. Some people may think they might only refer to religious beliefs, but in reality our belief system is much vaster and wider. Although our beliefs can align to follow that of religious doctrine (and again there is no one singular definition or outward representation of any one religious doctrine - take a look at all the Christian denominations as one mere example), our personal life and lived experiences also impact our beliefs, as do our personal situation and reflection on who we are. In fact if you really want to get technical, there are lots of factors. But I am not a psychology student, nor do I wish to spend weeks doing factor analysis (a statistical methodology). I'm not really of any one discipline, given my background as a linguist. I do want us though, to consider why we hold what we do close.

In reality, the possibility of being a psychology student testing factors is an interesting one when we consider what a belief actually is. Synonyms include: faith, trust, confidence. Doesn't sound very scientific or empirical (testable), does it? Rather the opposite of being objective. Being a social scientist of 'not very scientifically viewed concepts' is always an interesting one. More of that elsewhere, like here. This sort of approach, I feel, is

I talk about beliefs as beliefs of any kind shaping how we interact with the world around us. This means we all interact with the world around us, however passive or active we are. We don't sit in glass jars that way, we are always causing some sort of domino effect. However objective and scientific we try to be, our own world view is always going to impact how we treat others to some extent through us unconsciously filtering others through our own belief system, a bit like a sieve. Humans cannot be completely objective. Humans are not robots; we can never totally disengage our emotional, spiritual (or lack of) and personal states (beliefs involved with all the above) and even those who can compartmentalise, may do it with some labour or work involved. It is not just like flicking a switch.

Then there's the caveat of the formation of our own beliefs - why do we believe what we do? What precise moment or event lead to the change in our own personal 'belief landscape'? Was it a life event? Was it an active choice? Was it something that gradually sank in over time? Is it us being the product of the environment we are in, for example social class? Is it a group we are part of, like gender or race? I think when considering and analysing our own beliefs, these are potential questions to consider. The formation and changing of our beliefs can be like a landscape, like that studied in geography at school. Is it ever really static? Some landscapes undergo big changes, while others undergo only very slight change. Some landscapes are very resistant, yet others can wildly change.

Shaping and moulding beliefs is tough work - we are all unique and there is no one size fits all approach. Giving people a pile of facts just will not cut it given the thought stream above. (This is also supported in academic findings - we can't change attitudes from just presenting knowledge). We need to look at the nuances and be sympathetic to them, just as we have to fight for our cause and not comprimise ourselves.

bw
-krysiawally x

Monday, 27 August 2018

Burnout: where next?

Image description: the view through a car front windscreen when crossing a bridge. Other cars are driving in front. The sun is in the top right corner.
Taken 11 October 2015. 
Dearest readers,

I realised, when I wrote my last post on burnout, just how needed talking about burnout is. I even accidentally coincided it with burnout week on #TakeTheMaskOff, so if you would like to find out more, do give that hashtag a search. It's so relevant for me personally (says she writing her third post for staggered publication of the day), that we cannot neglect it any longer. I say we, as we all have a responsibility to get more clued up beyond this tokenistic gestures of 'awareness'. We say we are aware... are we really though? Are we aware of what we can only see, or aware of the depth of Pandora's box?

I believe I am currently in a stage of burnout now. I won't go into personal details, but have had an interesting time for a while, much like playing whack-a-mole of 'what can happen next'. No one's fault, life happens like this from time to time. It's just all a bit unfortunate. However, the intensity of trying to do everything and dealing with a brain that tries to self-abort due to unspecified stuff has really lead to quite an interesting mix. Like I said before, there is no 'set getting better time' or 'set remedy'. Where does autism 'awareness' fit here in this case? What does what I have just told you give as an immediate first reaction? How can you really help if there is no set remedy? And doesn't having a remedy/getting better analogy link it to a medical model (person as disabled, needing fixing) when we just don't know enough about autistic burnout yet? I know people who would argue for medical or social model here.

Just so many questions. I could continue asking many more questions on many more tangents. I could just write up questions we should be thinking about in all honesty.

I think we may need to take a few steps backwards chronologically to investigate. What I mean by this, is not just looking at someone who is experiencing burnout. We need to look at more about the person (and I purposely use person rather than individual here, to emphasise humanity). What is going on for the person? I'm not talking on an observational level here, no. Assumptions can come into play through observation, however hard we try (even if we are objective, we bring our own life experiences and potentially normative expectations - see 'Why I despise assumptions (and why you should dig deeper)'). I don't believe, defaulting from this, that much can be truly objective, especially when dealing with people. People are very complex!

Okay so this doesn't actually answer the question of what you can do to help... because there isn't one set answer (#dontpathologiseme) and we should be focussing more on creating spaces that are more appropriate. There are varying levels of 'appropriate' and what might be good. I use appropriate, as societal structures can be so wrapped up in what 'normal' is and what it means to be 'normal' and therefore following those sort of expectations. Organisational change of an incremental type might be more appropriate here, and how this would be 'kept accessible and just' would need some thinking done on it. Historically what might be considered as normal is not the same as now, although some historical parts linger. Individual beliefs of those in power, interpretation of religious doctrine disseminated through religious institutions in strongholds of power (remember how important the church was in terms of ruling and keeping order!), governments & legislation/policies and how group dynamics function at the time are all likely to impact what is perceived as 'normal', among other things. Remember the likes of the poor/workhouses (although do we still vilify poverty? Current affairs question..). We cannot undo historical impact on what we consider to be 'normal' overnight. What we can do though, is challenge ourselves. A little bit here on that to stop tangental diversion.

This link of reflection and burnout is important to take on board. Are our own expectations of other autistic/neurodivergent people causing damage? That's a question not to be openly answered, rather to be inwardly contemplated. I know others have alluded to a same concept in passing and linking back to #TakeTheMaskOff. It shows a potential feeding in to this phenomenon and just how interlinked as people we all are.

The answer to where next: untangling a lot of questions, addressing 'normative expectations' and considering different types of knowledge as valued. A lot of thinking material, by no means exhaustive and by no means will every neurodivergent person agree with me. But, that is why we are all unique, right?

bw
-krysiawally x

Sunday, 26 August 2018

Why I despise assumptions (and why you should dig deeper)


Image description: tunnel under the River Elbe in Hamburg
Taken May 2017
Dearest readers,

Many of us have been on the receiving end of false assumptions and premature judgement of who we are, what we do, who we might align with and what we might believe (or not - in any sense). I know I have, in some scenarios where I have just been misread down to the plain ridiculous. Not to be discussed here, obviously, and not alluding to anything in particular. How can I allude to any one scenario without making it personal? What I am doing though, is telling you why assumptions are dangerous, and how this intersects with other aspects of the lived experience of being a human.
Because many of us have had assumptions made about who we are, irrelevant of who we are, and I think this needs exploration.

I despise assumptions because they oversimplify me (and others) and the world around us, for a start. Assumptions can be based on knowledge, which might be true or might not be true. We use what we know to make sense of what we do not. Where this information might come from can be incredibly dubious in nature. Like harmful stereotypes or assumptions based on one experience. I don't think we are always critical enough of the information we take on board and then consider why root of why we think what we do. I think assumptions also come in part, from our own personal experiences of others. This is going to ultimately impact how we view individuals or groups of people and potentially homogenise groups (tar everyone with the name brush and minimise differences) -a dangerous move when we are all so different, unique and life is so much more than appearances.

We can never know exactly what anyone else is thinking at any one time. We can make educated guesses from shared life experiences, intuition and previous correct estimates - constructing how people ought to behave or think in any one given moment (and a canny link to theory of mind, a theory based on assumptions on what is, in fact, normative and what is not). Theory of mind assumes through observation to a degree: although it can explain some of the autistic experience (and it does seem to shed light on something that might be going on). For me it is just too superficial and not critical enough of what we call knowledge, how we form it and power differentials in communication. I believe humans are far more complex than any theory of mind (and other various theories) allow us to be. They also do not always allow for substantial self-reflection, rather just let people sit in prescribed silos.

To remain dynamic and to grow, we need to challenge what we know through considering what we actually assume and think we know - about other people, about the world and about wider life. I'm not saying you need to be an academic (in fact, rather the inverse as I explain in 'why having a masters does not qualify me as an expert'). What I do want you to take away from this is the need to  not assume everyone else is like you, or like anyone else of that social group you might have met, irrelevant of who you are or may be, and to not misconstrue motive in our dynamic and postmodern world. We claim to be so forward thinking and postmodern, yet our view of people and social groups can seem to fermented in fear, assimilation, assumption and oversimplification.

bw
-krysiawally x

Friday, 24 August 2018

Why having a masters does not qualify me as an expert

Image description: trees and fern in the woodland
Taken July 2018
Dearest readers,

Given that I have just handed in my master thesis, I would like to share the below (possibly contradictory) statement with you:

Having a masters (in autism studies) and completing a thesis (on attitudes towards autism in churches) does not make me any more qualified than I was before on these topics. 

Sounds controversial doesn't it? I think I need to break down exactly what I mean by this.

What I mean is that you can have all the academic qualifications in the world, yet just having extra letter after your name does not mean you necessarily know all facets to do with something. By example: just because you have a qualification where you studied autism does not mean you are an autism expert. I think I've said this one once before. What the qualification shows is that you engaged with material given, that you know about what was presented to you and you met criteria set out by teaching staff in terms of soft skills. Certainly in the case of a degree, you cannot know everything because you are so time constrained: how can you possibly know everything to do with one topic when you only grazed and explored what was presented to you in one course? I think that is part of the beauty of knowledge: is there really ever an end to what is out there? Casual link to why I don't and can't know everything about autism.

There's also the thing with the perceived value of who is carrying the knowledge, as I said in why it's time to take us seriously. That is a big part of who gets heard. I recommend you read that post as part of this argument here. I was passionate about examining and critiquing church knowledge and understanding before I did my MA. Nothing has changed in this. I'm still not listened to, my voice is still not valued and still have been the victim of ableist practice. I'm also still hurting too. My own personal situation has not changed. The only thing that might change is two little letters after my name. But they really mean very little in the grand scheme of things.

There's also this little thing of some people thinking I'm meddling and people thinking I'm only in this for academic gain. Wrong - klaxon. Please do not push assumptions onto me.

And although my masters gave me access to a lot of information, it did not teach me necessarily everything I wanted to know. What has been shown to me though, although not news, is what an extra fight, mixed with a lot of coincidence, the right people and luck, I have had to give to get anywhere near completion.

A qualification does not show what you are capable of in my mind, rather that you have done it and jumped through some hoops. You can still be capable of something without having a shiny badge to show for it.

Qualifications don't always value difference either - they show you can acclimatise to a set series of skills and requirements. It's not that qualifications aren't valuable, rather some are not as accessible as they ought to be for a variety of reasons and we don't see this until we are excluded ourselves.

Being able to do and complete a qualification is a privilege. It does not mean you are any better than anyone else, nor does it mean that you have more experience something at hand.

bw
-krysiawally x

Sunday, 19 August 2018

Something we don't hear about enough: autistic burnout


Image description: a pile of tetris shaped stones piled up in front of a hill
Taken: Winter 2015

Dearest readers,

This is very relevant not only to my life, but also to many other autistic people too. It happens, this is a real thing. It's a real thing because it happens to me. It's something that is not as openly spoken about and understood as it should be. From an outsider's perspective, we don't often see the damage until the damage is done.

I want to tell you, not in generic terms, but in personal terms, what having autistic burnout is like, If you want to know more about it, there are articles linked here, here and  here, which will give you some insights. They are written by autistic people. I also don't want this to seem like some sort of gawping parade or museum exhibit, as I am not some sort of spectacle to be oogled at. I have the right to my own privacy, as do all other autistic people. Therefore the way in which I will construct this is carefully done. If you've come for gossip - there won't be any here.

I feel broken, exhausted and cannot do the simplest of things. No amount of rest is replenishing, even if I am physically fit and healthy (or my usual) at that time. I honestly feel a bit like the pile of rocks in the image at the beginning of the post. People are exhausting. I'm much more sensitive to bouts of chronic anxiety and feelings of depression are not unusual. I feel like I am about to snap and implode simultaneously. There is no time limit or duration either, so very unpredictable.

It's 'too much for too long' basically - in five words to keep it short.

You may not see the above. In fact, you probably will not, which is part of the conundrum. How can something so internal be believed without 'proof'? Aren't you just making it up a bit or being a bit melodramatic? You never used to be like this (inward sigh).

Last two questions - you're not me so please don't try to undermine me. (Harping back to power again!)

The first question, doesn't this, in an odd way, overlap with my thoughts on spirituality? This links to my thoughts on many things actually - we are far too obsessed with the notion of 'evidence' being objective, observable and rationalist for it to be in any way valid. Klaxon! There is so much in terms of this specifically and autism in general that we need to explore more, and only taking such evidence into account is so limiting. It again links to various power differentials.... need I go on.

There's also this little thing I have found with burnout - it reduces future ability to deal with 'stuff'. It scars me, so to speak. I'm left with holes and bruises after each period of burnout. It changes who you are to an extent. This is something that I have personally found and is not just me explaining what others have already said. Although you do 'get back to normal', I use the word normal very loosely. You can find a new 'normal' or 'standard', but sometimes you don't. There is no prescribed journey through. I'm not sure if recovery is always the correct word, given what I said above and my position on normalisation. It's a bit medical model. But what I do know is autistic burnout is an actual thing and it is not pleasant.

This is also a reason why we are not all 'a little autistic'.

I want to keep this personal as I am not trying to generalise. In saying that, this is not just something happening to me - the articles I linked at the beginning illustrate that.

I am not the same person I used to be - I am learning to advocate for an environment which is respectful not only to my identity and neurology, but my body too. I have also learnt when I have the privilege to, and when I do not (power!). It is just out of order that so many of us have to sacrifice parts of ourselves and lives to do this in a world that is so wrapped up in individualistic notions of 'making it for ourselves', entwined in our Western culture. That certainly intensifies opportunity for such burnout.

This is a brief one, and only the tip of the iceberg.

bw
-krysiawally x

Friday, 10 August 2018

The one I can't think of a title for


'We were all so full of life, and none of us prepared to die, and I'm not ashamed to say the roar of guns and cannons almost made me cry.' (from Fernando, lyrics by Benny Andersson & Björn Ulvaeus)

Dearest readers,

Although musical lyrics, there is much that is relevant in the lyrics above. Some of us come so young and full of energy into new projects and especially so if they are seen as 'invaluable', 'subjective' or just plain unacademic (see my last post on my critique of this and this post as a gesture to the area I am passionate about). I know we underestimate the emotional toil that comes with working in new territory, especially territory that is purposely left blank in institutions due to its perceived lack of value. This is further heightened when we consider emotional labour (people who should not be doing all the work for others, ending up doing all the leg work on breaking it up into micro size pieces etc) and the consequent fall out on an individual level in terms of value and self esteem, but also a societal level where we make devaluing disabled people and the emotional labour we do acceptable. I say we, as I identify as one person in this case who might end up in this conundrum. Some people, irrelevant of their neurology, are savvier than I am when it comes to these things. 

I say savvy, maybe savvy isn't the right word. Maybe it has links to self-esteem, projection of voice among other things. I hate being the centre of attention (and I guess I touch a bit on that in 'Learning to amplify my voice: why loud is not always best'.) I'm an incredibly private person and it is a running joke I'd be great in the secret service, because I just don't divulge anything. Apart from on here, it seems. But put me on the spot - I'd hate to be famous and well known. I like being anonymous in a way, as it allows me to be who I am, and really think critically and earnestly. It allows me to grow organically (in many ways) and fits my personality too. I am just better one on one, or two on one (again - independent of my neurology). I also think we need to be open to change anyway and being placed on a podium, I can imagine it being much harder. 

By the by, emotional labour is not on. It harps back to power, again. What doesn't really? I don't think many of us are necessarily sensitive to this, through us not having to be doing all the peddling and carrying the burden emotionally. Some don't see it because they are in a sense, privileged not to have to be in this position. Reflection of ourselves, our behaviour and who we are, is by default, necessary.  I think this reflection is part of the antidote (but not the sole antidote, as I think emotional labour is product of various things flying around all mixed together - societal, historical, personal, etc). Whether you believe emotional labour is a thing, is something else altogether and opens up a whole new box of questions. Again, circles back to positionality and our own personal life experience thus far, entwined with a bit of belief in others' experiences and voices. 

And one could posit through normalisation, the ordinary life, etc... that such a reflection might be lost through the human oversimplification of others' experiences and how this might impact their view of the world, what they hope and aspire for and their views. Maybe it's taking it a bit far, but I do see how this could link. 

Are we prepared to be pushed? Are we prepared to be challenged - not in the manner of to be told outright we are right or wrong, but to be posed with a reality which is equally as real as ours, but that we do not inhabit and potentially deny agency to? 

I do think it is always worth a think and further examining oneself. 

Not really a structured post here, but certainly one that poses lots of questions. Even I have some on my own writing - to see deeper thinking and connections. 

bw
-krysiawally x 


Image description: a rainbow poking through the clouds in Dorset
Taken 2.7.2011

Thursday, 9 August 2018

Why it's time to take us seriously

Image description: an orange butterfly flying through a lavender bush
Taken 7.8.18
Dearest readers, 

I'm always fascinated how different types of 'knowledge' seem to be more inherently 'valued' than others. I purposely use the inverted commas, for we all know some knowledge is questionable in nature but also more importantly, that little question of value. We try to be objective and scientific, but given we are all human, I do question how objective one can ever be. How subjective is objectivity in any case? I don't think people, or even social science, can ever be 100% objective, in my own personal reflection. I would say I'm sorry to cause that ripple, but I'm honestly not in this case. Possibly a bit too early to start on some of the big questions, however it is a big question I am aiming to break apart to some degree, and then give my opinion on it. 

It's time to start taking a different view of rationalism and to start valuing knowledge that is not 'typical', that is not objectively sourced and the might not be 'pure', 'objective' or fact based. This relates to two distinct groups of which I am part:

  1. Knowledge created by the autistic community.
  2. Knowledge regarding faith and spirituality (of any dimension, may or may not be aligned with organised religion) created by researchers/others. 
I see so much overlap in the knowledge from the first group and from researchers/others who deal with the second... not seen as credible, seen as laughable, not seen as 'valid enough' or 'scientific enough'. But then comes the question, what do we consider knowledge to be? How would it be defined? Or maybe... how do you prefer to define it? Google gives the first definition of knowledge to be:
Facts, information, and skills acquired through experience or education; the theoretical or practical understanding of a subject.
Taking this, experience is seen as one basis of knowledge...  and both of 1 and 2 given above are clearly entrenched in experience. Certainly in the case of the autistic community - we live, eat and breathe our lives, yet others come along and claim to know more, not looking at our lived experience and invalidating us. People are not quantifiable objects in my view, because we have emotions, intentions and psyche that are not explainable in numbers or cold, hard facts. I mean, come on, even Freud as a Modernist had theorised the ego, id and superego, which are not tangible (referring back to my days of studying German Modernism, in module GE657 as an undergrad). I don't believe reducing humans to numbers alone gives justice to most phenomena - that is not to say it is not valuable, as quantitative data (data from numbers) can guide us towards where needs work and show effects of things we have done, and national trends. However relying on this alone is not enough. It is never enough. 

I think some people over rely on it as it can be harder to dispute and they feel more confident with it. I certainly think with some of the spiritual stuff it can be seen as 'hard to pin down', or 'too personally driven' with a 'personal agenda'. But when is any research not personally driven to some extent - because a person is doing it, it has to be personally driven. Isn't it the case that 'career', 'passion' or 'interest' is personal agenda for many people? Worth a thought. Maybe all is not as clear cut as we thought. 

There's also potential fear around talking about spirituality in general, especially when it is so 'untangible' and we can have so little control over it. 

But in the case of the autistic community, it certainly is more. It is power - that however loud we shout, our voices (whether we agree on things or not, because we don't - human nature) are never as amplified as they ought to be, in part because we are not seen as valued among other things. This really deserves a whole post in itself. 

The aspect of value is also the case for group number 2... it may not be seen as 'adding value' to someone's life, or just 'dilly-dallying' of the researcher for not doing something more inherently 'practical' and 'visible'. Who defines what is necessary though, and what groups of people need? Is it us, who do not inhibit that life world and do not have that experience of the world, yet think we know?  Or is it those who do not have the voice to share, or are ignored and gaslit, but have some additional knowledge compared to what is currently know? How do we know what people want, if we aren't them? 

Then there's also the issue of 'making the most impact with the funds we have'... and given how internal spiritual expression is (regardless of being part of an organised religion or not), how can we judge externally something so internal by outcome and impact? It just makes no sense to me. And this isn't just researchers wanting the most impact... this is further up the tree too, leading to a knock on effect further down. Linking back to the autistic community - what we need might not be (correction - is not) what is funded and just not seen as a priority (in fact it is not in both cases - just look at the A Future Together Report from 2013). 

How can we get away with assuming so much without asking questions of our own personal status? 

And then with group 2, there is also the issue of personal experience with such spirituality and/or organised religion, which will ultimately impact how we receive anything remotely spiritual. I think we get confused between spiritual expression and organised religion a lot, and I also think that we use our personal biases from previous experience to form opinions of faith groups or those who express any sort of spirituality. It might almost be grazing close to a 'social stigma' for some individuals, again linking back to autism and the current #TakeTheMaskOff campaign, which is uncovering autistic voices surrounding passing and masking. 

Please don't homogenise either group. It does no one any favours and impedes growth of knowledge. Plus I'm not a fan of people who place their ego first.  


One quote I found while browsing and links to this, in terms of continual reaching, pushing and regurgitation that I can end up in: 
Your wings were ready, but my heart was not. - Anon
I'm back off to read the philosophy book I was recommended via a contact of a colleague on Facebook while I wait for my dissertation back to send to the printers. Catch you later. 

bw
-krysiawally x 

Tuesday, 31 July 2018

Why talking about #TakeTheMaskOff is important

Image description: a large arc rainbow over  houses and trees against a grey sky
Taken 26.05.2018

Dearest readers, 

Since this is current and 'sort of a big deal', I thought I'd share a bit on this. It's a big deal as it cuts through so many elements of the experience of being autistic, in both academic spheres when looking at theory but also when just listening to people about their own experiences of being autistic in their own words. Not just words filtered through a published book, an academic article or reported by a charity, but actual words from real people from a variety of backgrounds and walks of life. 

Glossary: masking, in regards to autism, is effectively acting. It is covering up who you are to avoid social disapproval and to fit in. I am an expert actor in day-to-day life. You do it long enough - it becomes automatic, that your mask becomes you, leading to potential identity crises. When your mask breaks, through distress etc, it is confusing for the masker and the people around them and the masker can end up "shamed" and "stigmatised". Someone's had to swot up on Goffman, ahem! I see masking almost as damaging 'natural selection' - a way to survive, little else. 

I support #TakeTheMaskOff as it pushes against what could be termed as the 'force of normalisation'. I think we as humans buy an awful lot into normalisation - that is, when looking at disabled people, getting them to live a 'normal life' (thanks Nirje), but when we start digging a bit further, it's not just that. As herd animals, humans have expectations generated within our society of what a person should be, what they should do, how they should look and how they should act. Not strictly normalisation actually, more of a bypass from it and broadening the view to see how we are all perceived by each other. This can dictate our choices, our outlook and how we perceive others. Not only through our expectations of what others do, but also our expectations for us. This idea that there is only one normal life and few options of how this can be achieved. I mean, how many times have I heard 'what is normal' said by others, including the inverted commas gesture, for then judgement to be passed on on someone's lifestyle or choices... It's almost like diversity is encouraged, yet actively discouraged at the same time... oh what an oxymoron. Cue link to Goffman. #TakeTheMaskOff pushes to break this notion of 'needing to be normalised', and having to fit in - not out of pleasure, but allowing oneself to be oneself and pushing for the inherent respect that autistic people deserve. I'm not the only critique of normalisation, I know as I have read a fair few papers after realising I am not the only one with the opinion and wanting to know how exactly they share my opinion. 

I do not need normalising, thanks. What I'd actually like, is the postmodern world to be harnessed in the field of autism through acceptance of 'not only one way'. Autistic people's voices are part of the postmodern movement in autism research. I do love a good think and playing with theories, I think we should do that a bit more. A bit of talking, dialogue and listening won't go amiss either. 

From a personal perspective, there is so much I have had to hide over the years, either because I haven't made sense of it and no one else has really helped me, or through being shamed into hiding through the lack of understanding/knowledge around me twinned with few opportunities for me to speak up. So many times I was made to feel like I was awkward, a trouble maker, difficult, broken, #TakeTheMaskOff doesn't make these go away, not at all. But what it does do is create a space where I can read about others experiences and share my own into it... further mixing the postmodern mixing pot... and the post-postmodern one too... 

It exposes realities of how people live, what they experience and gives them a voice. Anyone who knows me will know how pro I am for getting autistic people heard and not keeping our voices in a chamber. 

It is activism from the people - inherently political and social at its heart, like all activism. It is so as it challenges perceptions of autistic people through re-harnassing voices. Not only 'big guns' in the community will get heard - someone whose voice might have never been heard before might get shared and their voice will be seen and heard. For me, propelling my voice onto a large platform like twitter is hard. I find twitter incredibly anxiety inducing (still, even though I use it now). Even so, it is a platform and a platform full of activism on micro and macro scale. Even if we label activism in such ways - to which gives it inherent 'value' and I don't agree with that - both complement each other and we need both. Neither is better. Many do not see what I get up to, as it is mainly foundation laying and opening doors (nor do I like the attention on social media really) - does not mean it is not valuable. 

#TakeTheMaskOff shows the power of social media. In an age where many of us actually say how much we need to switch off, or how we should be realigning our focus back onto face to face communication - those sentiments, although justified in part, do ignore the unspoken assistance that social media gives to connecting people together. Especially those of us who might have had a hard time in a space where the power differentials can be stacked against us and our voices might have been diluted, muted and distorted by the world around us. Obviously, goes without saying, it's not for everyone and that not everyone uses it creates other biases. I do think though, that this needs further exploring and thinking done around it. 

I write about 'taking the mask off' here so that these conversations do not remain in echo chambers or one location alone. These conversations need to grasp corners where they might be seen as uncomfortable and unwelcome, for activism does not sit in a comfortable corner. It means being in the firing line - a place I seem to be sitting continuously currently. It means being fired at - a lot - and pushing for what is right and what you now is right, even when everyone else around you is telling you it is unattainable and/or wrong. 

#TakeTheMaskOff is one of many autism related hash tags you should delve into and gain insight from. Masking is something that many autistic people do, whether they will tweet into the hash tag or not. 

I'd urge you to have a think about what and precisely who you think about when you hear 'autism'... and maybe someone how you might not consider, what effort might have gone into that mask and the surroundings around the person. It's not 'awareness' that needs to occur, but the next step of reflection and attentiveness. 

bw
-krysiawally x 

Sunday, 22 July 2018

#dontpathologiseme

Image description: stripes and lines all horizontally in different hues of grey

Dearest readers,

My statement:
#dontpathologiseme. 

Don't fit me into your box or
                                            frame me through your deficits or
                                                                                                medicalise all I do.


It's a downward
                         trajectory when you do that,
                                                                        taking away my voice.


and my dignity
                        and my inherent human value.



Even here, I am
                        limited by only being able to
                                                                    type horizontally, left to right.


Trying to break
                       free from such constraints is
                                                                   hard, using my space bar to break
                                                                                                                          the rules.


Please don't place that
                                  theory of mind or that
                                                                    other deficit framework on me.


Do you know what
                              you are saying when you
                                                                        do that to me?



You're framing me within
                                       someone else's words, whose we
                                                                                             assume to be true.
 


Someone's words, where
                                      power has yet to bring a widespread
                                                                                                  critique, and not mindless
                                                                                                                                                 following.


Someone's theory, which
                                      takes what I do and seeks to frame
                                                                                               me through what I do or how I look.



Reducing me to a list,
                                  reducing me to a checklist,
                                                                             reducing me to a list of wrongs.


A list of mistakes I make,
                                          a list of the hurt I cause and the
                                                                                               apparent burden that I am.



That £32 million,
                            whilst I sit and suffer from that waiting list,
                                                                                                 or that quack therapy,



pushing me out seems acceptable,
                                                      picking on me seems acceptable.



What I actually want is to be
                                             listened to and validated. Because where I
                                                                                                                 have covered who I am up,



I have had to fight to find
                                        out who I am against all these reports of
                                                                                                        who I apparently am, or might be.



I want people to stand alongside
                                                     when I speak up and voice my
                                                                                                          needs. To recognise what has been done.


I would like the autistic voice to
                                                  be heard and an autistic perspective
                                                                                                            to be wider disseminated and tested.


To be valued,
                       to be seen as your equal,
                                                               to be viewed as a person.


#dontpathologiseme



All links are worth a read in my opinion and reflect, in part, slices of the reality of being autistic in a non-autistic world. All should be accessible bar the article from T&F online. The abstract should give enough details. Some are academic, some are news articles, and there's the DSM which needs no introduction...

There are of course, always more I can say, always more links I can find. However, as a starter, these provide a taste of some good autistic academic writings and activism alongside some of the current news going on.

bw
-krysiawally x


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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