Sunday, 27 January 2019

Why should I get angry for you to notice?

Image description: The word 'horizons; written in metal across a cement wall
Taken: 11.1.19

Dearest readers,

I'm just going to answer the question in the title now, to save you waiting. No I should not. It is demonstrative of various power differentials at work, and also where normalcy mediates in an unhelpful way.

As someone who has been on the receiving practice of ableist practice once too many times (and once is too many times in my book), I know the impact of such practice that is possible. I have been spoken over, gaslighted, ignored, discredited, manipulated, etc etc in the past. I'm not out to name and shame, because that would just serve no purpose other than me airing off in the public domain. What I do intend to do, is to tell you why it is so problematic that I have to point out to you that there is a problem multiple that I have to tell you multiple times that you are discriminating against me, and that no one is willing to, or brave enough, to stand up alongside me while I say this.

Here are a short selection of rebuttals I have come across:
  • 'Oh but it's not my place to say'.
  • 'Oh but if I say something, the other person might take offence.'
  • 'Oh, but I'm sorry, have you tried [some other nonsense which I know does not work, like bath salts].'
  • 'Oh, I need to go now.'
  • [refuses to comment]
  • 'Take a deep breath, dear.'
  • 'We can't always get our own way.'
  • 'We can't be inclusive to everyone.' 
... the list can go on...

I need one of those buzzers that says *bullshit* every single time one of those is said. I cannot even start to pick them apart currently...

This isn't about getting a 'way', or to cause trouble (although the way this escalates, yes it is trouble!) This is not being selfish or about preference on a level which. This is about needs, and when needs are ignored. Distress and sensitivity to what others need in regards to access, to participation and being among. The ability to not always be 'barred' into this idea of normalcy.

I shouldn't have to get angry as I should be understood, without this filter of 'oh diddums, put up with it because you are [a woman/disabled/autistic/short/etc]'. I shouldn't have to be faced with injustice so many times that I have to give out emotional labour to tell you what is wrong. I should not have to tell you, as it shows respect for others when we care for others in a meaningful way that they need, rather than some pity clap-trap which does not empower people, or respect their lived experience. It's out of respect for intrinsic value of people that we stand alongside them.

To those who have said something like this - I am severely disappointed in you all. You should know better, especially those who have said this to me in a church setting - I am most disappointed in you. To be a Christian is to stand in the firing line at times, sometimes most or all of the time. I'm not saying I don't forgive, however addressing this sort of thing, dialogue and self reflection is very much the sort of activity which is required in a faith setting from what we are asked of in those places. I would continue and reference to back myself up, however I will end that point here. This is not something which is setting specific. This happens everywhere.

Rights of disabled people, and the various other groups that we intersect, are a human rights issue. It's about time we started looking at this in that manner, rather than seeing it as 'something nice to do'. Lots of things are nice to do, like eating ice cream. Doesn't mean I do it all the time. This is something which needs to happen all the time, because it involves people, and we are all of worth and value. We are all of worth, even if we are not part of this normalisation agenda (how I call normalcy as most valued life to have), or however our bodies and brains are, or however we process the world. However rich, however poor, whatever religion, whatever ethnicity, whatever sexual orientation or however you define your gender.

We place the idea of 'disability rights' into silos (categorise into boxes) - of who they might apply to, or what they might look like. I'm not sure we can do that.  I think we like to do that though, so we do it anyway. We think of things that could or might be more relevant to certain 'groups' over others. We also can have a 'hierarchy' of disability - who is the most 'disabled'. Again - I'll whack my button from above - no. In terms of autism - 'high functioning' and 'low functioning' come into this. These place value on people on account of observable 'capacity' (and note the ''). It discredits both groups. It is assumptive on so many levels. Autistic people are not all the same - some of us are physically disabled too, some of us have chronic pain conditions, some of us have other neurodivergent 'conditions'. But in spite of this, we all have the same value inherently as humans, as people, therefore we all have the same rights. It is just that how we might be disenfranchised might have differing dimensions (with some being the same in some cases).

Transformation to angry self-advocate: complete.

bw
-krysiawally x

Thursday, 24 January 2019

Nothing for us, without us (again)

Image description: a small green booklet with 'I know my rights' written on the front in white font
The book is laying on top of a pile of typed work
Taken: 23.12.18
Dearest readers,

I hope this piece finds you well.

I thought I needed to put my tuppence in on some things that have been bothering me. Well, actually those 'some things' is one thing. And that one thing is 'able-bodied/neurotypical people speaking on behalf of their disabled/neurodivergent counterparts, with no co-production of works and attribution of content and ideas to disabled/neurodivergent counterparts'. Phew. That's a bit of a mouthful, so I'll split it up and break it down, bit by bit. I know I can write in such a way which is quite academic.

The first part: 'able-bodied/neurotypical people speaking on behalf of their disabled/neurodivergent counterparts'. So in plain speak, those who are not disabled, in any way representing disabled people through a lens and perspective of normalcy (able-bodied, neurotypical as better, etc), and either thinking, or implying, that their knowledge is exhaustive on the matter without speaking to disabled people, or reflection on their own position. This reflection might be surrounding their own ability, their own background, their gender, their life experiences etc. This can be 'technically' known as reflexivity, but in all honesty, you don't need to know the technical, academic jargon to be able to do this. I've known many individuals who can reflect on the word around them, and their own status and behaviour very well who do not have a degree. Other very highly qualified people can be incredibly ignorant on the inverse.

I'm going to throw it out there - we can never represent everyone. It is hard to inhabit spaces of no power and high power simultaneously. There, said it.

But what we can do is create dialogue and listen. We can be sensitive to the needs of others, even if we ourselves do not see them as needs. We sometimes do mediate, through our own understanding of the world, the importance of 'needs' through our own subjective filter. This filter is unconsciously constructed over our life time and we can pay as much attention as we like to it. Some of us will know others see the world differently and see it is valid. Others of us might want to instinctively question and possibly through ignorance, may ask a pertinent question leading to emotional labour. Others of us think those who see and perceive the world differently to themselves, are wrong. Many of us are caught in a sticky mix of all of the above, and more. I don't think it's something we can apply strict categories to, and that fits into neat little boxes, as life isn't like that.

Dialogue is important as is addresses issues of power, whether imposed or inherent. This covers the part around 'coproduction of works'. Without dialogue, we are speaking on behalf of people whose voice is equally valid to ours. One such example is autism "awareness training" without input and co-production/leading from autistic people, with equivocal payment for their time. How can we possibly know the pertinent things of being autistic, what it means to someone and actually what we as people can do, without this dialogue? I honestly think you are opening a whole new can of worms. Not to say participatory work is easy (it's not), but it is utterly necessary.

Myths are perpetuated, power differentials are strengthened and this whole 'pity' model of disability (charity model) is further perpetuated. We need to self-evaluate. I don't need your pity - I need you to stop being ableist and respect me, and by defacto, my life experience and needs. Point made. 

I also remain sceptical of "something is better than nothing", because that "something" could ultimately be doing more damage than help. We could be spreading mis-information. We could be not checking the reality of what we are saying. We could be furthering ignorance among others. I think part of this is because we like "facts" and don't "trust" subjective self-reports and anecdotes, which is where the majority of information can lie among disabled communities. Rather than looking at the authors objectives and alliances, we have been known to discard because it is "not credible". We need to think about this.

The final part is around 'attribution of content and ideas to disabled/neurodivergent counterparts'. Do we want to credit our disabled peers for their work? Or do we wish to take their thoughts into a new arena and leave their credit behind? I firmly believe you cannot have a discussion around disability studies without disabled people (and in the field I'm in more precisely, autism studies without autistic people). Without this input, we create a biased playing field not only in terms of power (where most scholars in the autism field are not autistic as an example), but also an information and knowledge base which is not true to reality. It can be seen as a distorted image of reality. We need to make spaces so disabled academics can be heard and are not fighting off bureaucracy. This gets to a much deeper issue of ableism in academia, which I will hold off firing off about for the moment (and although linked to my argument, a tad too tangental).

My advice? Start listening and addressing critique when it is heard. Critique isn't necessarily to undermine you, rather to show things can, and ought to be, better. We need you to listen to us and to want to work with us. We need our ideas to be taken seriously. We need to be treated in an equitable manner instead of tokenistically.

bw
-krysiawally x

Thursday, 20 December 2018

Academia and burnout


Image description: pink blossom on trees on the street in Gothenburg.
Man in pink puffa jacket walks along the pavement between the trees.
Taken 26 April 2016

Dearest readers,

I feel this post needs to be written and the area needs to be addressed. I've been drafting it gradually over time.

Any frequent readers of my blog will know that burnout has been a regular theme on here for a while, that I have been unwell and that autistic burnout has been a part of that. Examples of my rants / moaning / expressive writing (pick the one you feel is most appropriate!) can be found here, here and here. Kind of shows I'm not brilliant at actually looking after myself (or my slightly ropey mental health, to that matter, given they are all within the last 6 months). I don't think I need to give any airtime to the reasons why, mainly because I value my privacy... Being in academia - there is no work-life balance, because people are seen as products (both staff and students) who are judged on output. I tried to explain this to a few clergy whom I know, with shocked and aghast responses. Allowances are hard come by with personal sacrifice being paramount. It is an arena which I have seen to be rather on the exclusionary side.. okay this is an understatement - there are barriers which exist which exclude and discriminate against disabled academics, and disabled academics are not the only group who are at a disadvantage.

Certainly I have found in my experience of being a student, it can be a system which does not allow for difference in working styles, speeds and communication styles. It is one in, one out. It can be impersonal, inflexible and constrained by bureaucracy. Trying to fight for what you need, when you are already at a disadvantage due to your body, neurology or whatever needs not being met by the environment you are in, placing you at a disadvantage... it is tiring and adds extra strain onto your to do list of things you need to do, but also onto the level of energy you have to dispense to get something which is almost either a given or much more accessible to our 'abled' and/or not so neurodivergent counterparts.

You end up as an activist for your own needs, whether you like it or not, whether you have the energy for it or not. You end up fighting bureaucracy for right and equality of access. You can end up marginalised by colleagues and misunderstood, thus in a difficult working environment.

Then there's health and other services not being connected up, accessible housing being that much more expensive (when disabled students generally have less money to play with in the first place), support services and monies being cut and the potential lack of knowledge that staff might have.

The above is merely hypothetical and very vague, however can be very much a reality.

There is no easy way to address this, as it is so systemic, where would one start in terms of deconstructing, let alone improving, what is actually going on. Again, it is down to those who are already carrying this extra strain to speak up.

There's also the notion of power dynamics as well - I was hearing only a few weeks ago at a Disability History Month event that disabled lecturers and teaching staff may potentially be receiving lower satisfaction scores on their teaching - currently being explored. We might not be able to work full time hours either, and if students are not aware or placing the same expectation upon us as our abled and/or non-neurodivergent colleagues, this may lead to further issues for us. Just have a think and a speculate and I'm sure you can tie this paragraph with some of the points I made about disabled students and their experiences in the second paragraph.

This is really only the top of the iceberg when we consider the recent strikes in the UK that universities have been experiencing and the reasons behind them, i.e. academics being horrifically overworked and lack of stability in contracts and pensions being cut.

No wonder, given the reasons above, of which these are only a mere few examples, is burnout such an issue and that disabled students and academics are so vulnerable to burnout, exclusion and systems that do not work in their favour.

bw
-krysiawally x

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

Why should I get angry for you to notice?

Image description: The word 'horizons; written in metal across a cement wall Taken: 11.1.19 Dearest readers, I'm just going ...

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