Courage! (or Game On part 2)

With thanks to Womens Equality Network for accepting me on the 2020 Mentoring programme. 
It's working (!)

I have a problem.

I over-think.

And I am over-critical of my self (and everyone else!)

And my instinct is always to assume something is my fault until proven otherwise.

Nothing makes that problem kick in like saying something you think is self-evident or a non-issue, and it being received as something jaw-droppingly serious.

Normally I'd be straight down that overthinking spiral with nothing solid to grasp and stop my fall.

But recently this has begun to change.

I have reached the point in learning to be an academic where I know the strength of the evidence behind what I say (or lack of) and the courage to stand, and either hold my ground or gracefully acknowledge that I misspoke without it affecting my self-worth. And I can explain why personal experience has a strength of its own that demands the right to be treated seriously independent of research evidence. I no longer accept the dismissive 'Oh, that's just you', and I am learning to refute it calmly and strongly when I hear it.

Yesterday. I said something casually. It was received as a serious issue needing action by someone with power to take action. Adrenalin and the familiar 'argh! What have I done?!' kicked in almost immediately.

I scanned my memory to imagine evidencing what I had said to my satisfaction. Had I exaggerated? Misled? Nope. Was I relying on heresay? Nope. Could I assemble a written evidenced answer swiftly if needed? Yep.

I checked with others how what I had said might affect them. And, to be honest, I was looking for a bit of external reassurance too.

I started this blog with the title 'courage' because it felt as if I'd needed courage to own what I'd said yesterday. Courage is the ability to 'feel the fear and do it anyway'. It has certainly taken all my courage in the past to come through situations like this. But not today.

Unpacking it, perhaps it's less a case of needing courage, and more a new-found confidence. Who I am is enough. Not perfect. Enough. What I know is not perfect. It is enough.

Perhaps it is time to stop hiding and start taking a stand.

Writing like Douglas Adams

I accidentally caught part of a retrospective on Douglas Adams on Radio 4, my guilty middle aged middle class vice (Radio 4 that is, not Douglas Adams).

To have written what he did, he had to be an unusual person. The ideas and stories and phrases that came from him could only have come from him. 

What I didn't realise was that he and I share a trait or two. 

When he wrote, what a script editor might think needed a minor tweak would send Douglas Adams back to square one and result in a complete re-write as if the entire document had fallen apart. Because it had. Because everything is interwoven and to change one thing is to disturb the whole. In Doctor Who terms, one tiny change - such as Donna Noble saving her dad from death - can rip a hole in the space-time continuum and bring the universe to an end unless there is a dramatic intervention. 

Listening to Douglas Adam's past colleagues and collaborators - and his poor script editors - talk about this trait made me see that his scripts really had only needed a minor tweak to make them suitable for their purpose, which was to be broadcast as a radio show. They had not needed complete rewriting for any audience other than Douglas Adams himself. He was compelled to do those rewrites because even one tiny tweak created such cognitive discomfort. 

I write like Douglas Adams. I am not claiming to have his flair, wit, originality or skill. I lay claim to the same trait whereby what someone might perceive as suggesting a minor tweak is received by me as a need to return to square one, in order to reconstruct from the foundations up something that 'feels comfortable' and incorporates that tweak. 

But you can't do that with a doctoral thesis. At least, not for a doctoral thesis that you intend to submit. 

I need to learn a two-fold art, and I need to learn it rapidly. I need to learn how to spot when what to others seems a minor tweak does require a return to square one, and I need to learn to live with cognitive discomfort when it does not. 

The power of three

I was brought up believing you MUST triangulate if you wanted your qualitative research to be taken seriously. A rough guide to triangulation is that if you research something using three different methods and combine what you learn, your results are more trustworthy than if you use just one method.

In my way of making sense of the world, that's like looking at something from three different vantage points in order to get a clearer picture of it. That's where the elephant in my blog title comes in. Five people use the sense of touch to describe an elephant. Each describes it completely differently because each is touching a different part of the elephant. They can either fight over who is right, or try to work out how their stories fit together. Or I guess they could simply say 'this is my truth, and that's your truth', but to me that seems a waste of an opportunity to learn.

What interests me right now is how rarely triangulation is used to communicate triangulated research findings. Communication is not a simple transaction of 'this is in my head; I put it in words; you read my words; I have communicated what was in my head', any more than research is a simple 'this is what I want to study; I used a method; I can now describe the thing I studied'.

I've come across using different communication methods used for different audiences. I have seen experimental and alternative communication methods, particularly in autoethnography and participatory research - art works, drama, poetry - and sometimes these are published or performed alongside accounts using traditional academic words and language.

What I haven't found, I'm guessing because I haven't found the right places to look, is anything explaining the importance of triangulation for communicating your research findings to those researchers who routine use triangulation to create their research findings.

We know that most communication between two humans is non-verbal. And yet when it comes to communicating research findings we routinely rely not just on words but the specialised words, language and culture of our chosen discipline.

What of my own research?

The bulk of my doctoral research involves five women all considering the same phenomena from their own perspective. I am one of the five. We all have dual researcher-participant status and roles. I am the only one trying to belong in the academic world. I stumbled into researching ways of knowing and ways of communicating, via an intention to research the practical task of improving public involvement in public service policy making. I have worked with a mosaic artist to produce a mosaic that shows me what I hadn't realised I was thinking. Photos of parts of the mosaic will appear throughout the printed thesis. The left pages will be an 'everyday' summary using everyday words and pictures. The right pages will have the traditional academic account. I've provisionally allocated 20,000 to the summary and 80,000 to the academic account. And I am just grateful that photographs and diagrams may speak a thousand words but none of those words for part of my word count.

Will a combination of the three 'speak' louder and communicate something different from one or two? I have no idea if it will to anyone else. But for me, it helps me work out what is 'going on in my head' in a way that words alone cannot.

Game on

Here’s a traditional academic thesis.

1. Start with what the academics know. [even if that’s not how your research interest started, this is where you must start]
2. Formulate aims and questions that are permissible to be asked within the academic school, discipline or approach you have chosen.
3. Explain the background
4. Review the academic literature to establish what academics know that is relevant to your question(s). Depending on the discipline, you may also review practice literature or ‘grey’ literature generated by professionals who are not academics but who have a professional expertise in whatever you are researching.
5. Collect data, and write about your data.
6. Work out what you can add to the existing academic knowledge. Do this by seeing where your findings add to or contradict or suggest new approaches to the existing academic knowledge.
7. Conclude that you will do the research better next time, and list ‘more research is needed’.

That is reasonable, given the function of an academic thesis is to attempt to prove you are worthy of admission into the status of ‘an academic’.

It is also an exceedingly good way to replicate the cultural and institutional norms of academia.

But what if…

What if your thesis is about knowing and valuing knowledges?

What if you want to argue as your central thesis (academic) argument that everyone wins if we find a way for academics and non-academics to value their knowledges equally and value the differences between their ways of knowing?

Game on

I spent several years trying to work out how to take a variety of academic ways of knowing, create a suitably academic rationale for my work and then interpret and discuss data co-generated with members of the public using a transdisciplinary academic framework I created.

I wouldn’t recommend that approach. It broke me.

Game over

I decided to settle for second prize and just ‘get a doctorate’ by following the traditional format and keeping my head down. I reasoned that I could write what I really wanted to write at a future date. 

Even that was a struggle. I had such rich data, and any academic approach meant I would have to close my eyes to so much of that richness. 

I couldn’t work out how to justify academically some of the assertions I made, such as the ‘leap’ from saying that what I had learned about public involvement in policy making applied equally to public involvement in research.

Or was it game over?

My happiest time had been in 2019, where three of the four other women and I met for a whole day in a beautiful café in the middle of Snowdonia, to reflect together about having done the research together and for me to pour out my woes at my inability to produce a thesis. Technically it was ‘the final reflective workshop’ and counted as data collection as I had ethical approval for the day and had audio recorded it.  

My second happiest time was a fortnight ago, when all four women graciously and warmly agreed to individual ‘lockdown’ phone or video calls.

From reminiscing while looking over transcripts, I realised that there was thread that could be traced back to the very first workshop in 2015 and crystallised in 2020 as a set of four questions about public involvement:

• How will ‘they’ value my knowledge? [where ‘they’ refers to any institution seeking to ‘do’ public involvement]
• On whose terms would I be getting involved?
• Why should I get involved?
• How can I get involved?

That triggered a new ‘what if?’

What if the reason I couldn’t make my thesis work was because I was starting with the wrong sort of questions? What would happen if I started with these four questions? The answer was clear. Everything falls into place.

My current ‘what if?’

What if instead of the traditional starting point of what academics know, I began with the four questions from the five women. What would that look like? Would it be do-able? And would it get me a doctorate?

The non-traditional thesis.

1. Start with what the women know.
2. Formulate aims and questions that would make sense to the different members of the public I have met over the decades who I’ve engaged with around the topic of public involvement (in research or something to do with health and social care).
3. Accept that, if the purpose of the Background chapter is to help locate the research in a way that is meaningful to the reader, what needs to be in the Background depends the your reader’s starting point. So if I intend to write for more than one ‘sort’ of reader, then I need to use the Background to lead each from their starting point to the starting point for this thesis journey.
4. Begin with what the women knew – ie begin with the findings.
5. Add the academic and practice literatures that are relevant to the findings.
6. Synthesise the different sets of knowledge to create new knowledge, by putting the academic literature at the service of the findings, and the findings at the service of the academic literature.
7. Communicate the ‘something new’ using methods of communication associated with different ways of knowing, while trying to make the communication accessible to academics, other professionals whose role includes ‘public involvement’ and at least some groupings of members of the public.  
8. Conclude that I will do research better in the future, describe a vision for a new way of researching that combines academic and outside-of-academic ways of knowing in epistemically just ways, and list ‘more research is needed’.

I don’t know the answer to the ‘what if?’

But I do know the game is back on.

Academic profile

Sometimes I forget that I'm an academic.
Sometimes I reject the idea that I'm an academic.

But, here we are.

• I am still, by the skin of my teeth, a doctoral student which means I am part of an academic institution.  I have a PURE account and an Orcid ID. I have access to the private resources of the academic institution (most precious of which is a library log-in). This is the everyday garb of an academic. 

• I have peer reviewed publications under my belt. These are the finery of an academic.

• I don't just find things out or do contract research or try to make sense of life. I think about how people live their lives and try to make sense of life. I think about what research means, what counts as 'knowing', what 'quality' means in relation to research. This is the thinking of an academic.

By any way of determining if someone is 'an academic', I cannot escape the conclusion that I am one, at least for now. 

Orcid (my ID is 0000-0002-2608-7170) and Scopus keep a record of my publications, which saves me the trouble. But they miss the one that is most precious to me because it was my first. It is also the only thing published in just my name. And thereby hangs a tale, because it should have been co-authored. But for that tale, you need will need to go and read the review. It is not included in Orcid or Scopus because it was 'just' a book review. So, for those of you who are interested (and so I can find the citation when I need it!), here it is:
Anne Collis (2016) Changing social attitudes toward disability: perspectives from historical, cultural, and educational studies, Disability & Society, 31:5, 718-720, DOI: 10.1080/09687599.2016.1167362

I still need to add a few academic outputs to this blog post that are not on my Orchid profile. Things like a co-presented paper at the Lancaster disability conference, and a co-presented paper at a National Research Methods Festival - both co-authored and co-presented with my colleague Alan Armstrong. Oh, and the co-presented paper at the WISERD conference where we won a prize for the best collaborative paper. That one was with Alan and Dr Sara Louise Wheeler. And then there's the poster, accepted at the National Social Services Conference one year, co-created with Sara and Dr Roger S Slack. You see, as long as I've been reluctant to identify as an academic, I have been dismissive of academic finery. I have not kept track of those trappings that make up an academic profile.

To complete my doctoral studies, I need to own that identity, I need to 'be an academic' at least for now. And that means learning to value and curate my academic outputs. It means creating an academic persona. It means giving myself over to institutional processes and bureaucracies.

It means working on my academic profile.

And another label

Labels seem to be coming along like buses. Having dodged them all my life in favour of 'I'm just a bit weird', I'm now asking for one label [big news: I've met the criteria to be accepted onto the waiting list for a first appointment with the integrated autism service. No idea how long the waiting list is, because I'd have to phone to ask. And I don't like phones] and I've also got one on my GP sick note: Anxiety.

Well, yes, I do get anxious. But I am also incredibly resilient, have good self-care and self-management skills and can ride it out when I get patches like this.

It takes a lot to break me.

And that's what's happened a month ago. I'm quite pleased with myself that I held out for a month, doing what I need so it would get better. Instead, it's become clear it isn't going to go away while I'm working and studying, so it's time for a month off to focus on self-care. [Offers of hot chocolate are welcome; making decisions about where or making plans in advance are not! Nor is unsolicited advice on how to improve my mental well-being]

You know what finally broke me?

A bureaucratic system, or a bureaucratic interpretation of a system, that said that because I did not have a label I would have to be treated 'just the same as anyone else'. The thought of being forced to do the activity 'just the same as anyone else' broke me.  If everything else had been fine, I'd have ridden that like I've ridden other storms. But it came on the back of months of multiple uncertainties, shifting goalposts and life changes, and if there's one thing I don't do well it is uncertainty and unpredictable change.

And that's what lay behind my last blog. They needed a label. So I set events in motion to get one. And along the way I've picked up a second label, anxiety.

When using a label feels like cultural appropriation

I've sent off my self-referral paperwork to the Swansea Bay Integrated Autism Service.

Am I autistic?

I don't feel it. I know, own and am glad I am neurodiverse. And I know there are a lot of features of my neurodiversity and how I  manage it (or don't) that overlap with autism.

But autistic?

I did the two questionnaires in the self-referral paper then scored them, so I know I score as autistic in terms of those diagnostic tools. But does that make me autistic?

Other people have dropped hints, from the psychiatrist friend who, when I showed her a brain scan and said they'd commented on the size of my amygdala casually mentioned that this was common in autism, to the autistic researchers who just smiled knowingly when I said I wasn't autistic.

Autism would provide a more than adequate alternative narrative to the one I currently use to explain some of my childhood and adult experiences.

But there are other labels that I feel are more accurate.

So why use 'autistic' as a shorthand if I didn't own it? Simple. It's better understood, less feared and more likely to result in the accommodations I need than any of the other other labels that I might feel are more accurate.

Here's what happened that made me worry: I used the label at the Apple Genius bar as a short-hand for what I needed, because my peculiarities mean that treating me as if autistic in that situation would mean I was able to function without meltdown. And I felt fairly secure in assuming that anyone working in the Apple Genius bar would have a fair understanding of how to switch the interaction to an 'Aspie-friendly' one. I was right. If anything, I think my geek was relieved to be able to interact in his own culture rather than work to interact in his learned, neurotypical, cultural style.

But it felt like cultural appropriation. If I do not consider myself autistic, what I had just done was to adopt aspects of the culture because it suited my purposes, because I felt like it, and without consideration for those who do own the label or who are assigned it by others. And that is at the heart of cultural appropriation.

Of course, this presupposes that Autistic is a culture, like Deaf is a culture. And to me the d/Deaf debate works just as well for a/Autistic. If you aren't familiar with the debate, 'little d' is a hearing impairment, 'D' is a culture with its own language. For me, neurodiversity speaks of cultural difference, not impairment of the mind/brain. 

Cultures are funny things. Culturally I fit with the neurodiverse autistic sub-culture in a way that I don't fit with any of the mainstream sub-cultures. I can relax and be understood better. I discovered that the first time I encountered the neurodiversity stream at a disability conference. So in what sense am I appropriating someone else's culture?

• Because cultures and sub-cultures have names. And although culturally I may feel at home in one place, does that entitle me to use the name of that culture when I do not own that as my identity? As a White woman, I might feel more culturally at home in a Black culture - but that does not make me Black. Similarly, feeling culturally at home in an Autistic culture does not make me Autistic. 
• Because, philosophically, what is a culture but a decision to draw the line in one place rather than another to create groupings and categories of people? Unless or until I own the label 'autistic' I belong within the grouping of 'neurodiverse' (which, irritatingly for me, is not in common use as a cultural grouping) and I do not belong in the grouping of 'autistic'. Therefore I have no right to claim the accommodations that come with 'being autistic'. That does begin a whole separate argument about whether autistic is a sub-set of neurodiverse, or whether the two are more of a Venn diagram of overlapping categories, but I'm not going there with this blog post!

I faced an academic situation where, as I have no label, we couldn't be adults and accommodate each other appropriately. Cue trip to the university mental health advisor for a personal learning support plan and the tentative suggestion that in the future an official label of some sort might be a useful short-hand that would get me the understanding I need from others. Of the labels I might be able to acquire, 'a/Autistic' would be my preferred label. This time I got as far as filling out self-assessment paperwork for an Integrated Autism Service. The questionnaires didn't make me question who I am; I already know I have sufficient features overlapping with autism that ticking the boxes honestly would yield a 'yep, she's autistic' score. Answering the discursive questions was a different matter. I answered them honestly, and in the answering of them I realised how much more adequately the autistic narrative made sense of my life than the narrative and labels I have been using.  

Have you seen any of the episodes of Doctor Who that involve a Time Lord hidden so deep under cover that they have hidden themself from themself? And then there is that painful and empowering point of becoming self-aware. Perhaps that is me. Or perhaps it is not. 

Until I have resolved to my own satisfaction whether I belong or am appropriating the cultural label, I will continue using my compromise when explaining myself when I need to: "I might as well be Autistic".