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".

What accessibility means to me

I'm sat in a classroom, listening to people talk about ethics in educational research.

I'm sat so far at the back that I'm actually sat on the floor, plugged into the power socket, half listening and half blogging, checking Facebook, dealing with work, getting my head round news from home.

It's strange how three metres back and a few inches down makes such a difference. I can hear, see same as everyone else but I don't feel part of the session. I guess that's because I'm not!

I've chosen  to semi-exclude myself, to dip in and out. I must never forget the privilege I have, firstly to be able to dip in without being required to be fully inborn out. Second that, a few years back in my wheelchair-using days, I would have had no choice. I wouldn't be three metres away but down the hall and down the stairs away from the others.

So here's to environments that let you be yourself - to dip in and out, to participate or observe. And here's a shout-out for environments that don't remove the include/exclude choice by forcing you to do something or denying you access.

The privilege of choosing not to be oppressed

Intersectionality and privilege

I'd never be told to ‘check my privilege’ before. It was an eye opener.

It came about because I was challenged to think about intersectionality.

Inter-what?? Intersectionality has several meanings, all of which include a sense that ‘just because we are all X, it doesn’t mean we experience being X the same way’. Most meanings of intersectionality also talk of stigma and oppression, and how the totality of who we are will affect how we experience oppression in relation to any characteristic. For example, most writing about Black oppression is written from a man’s perspective, but Black oppression may be experienced very differently by a woman. Most writing about oppression of women is written from a White perspective, but oppression for being a woman may be experienced very differently if you are Black. Most writing about being disabled is written from a White man’s perspective and that’s not terribly helpful if you are a disabled Black woman.

You see, I have a number of stigmatising characteristics.

·        I'm fat.

·        I'm a woman (and to make that more stigmatising, I don't even behave like one - I don't wear make up or do my hair or nails).

·        I have a long term mental health condition in that I live as a committee within my head (entertainingly my other selves reject the ‘mental health condition’ label - they rather enjoy being a collective, it's only a couple of us that recognise the label as applying to us).

·        I have a number of physical health problems that interfere with everyday life.

·        I don't have a career or a proper job.

·        I’m over 50

But despite those stigmas, I don't seem to experience the oppression that many people with one or more of those characteristics experience.

It's possible I've internalised oppression (so don't see oppression for what it is). And it's possible that I am in denial or that I subconsciously use avoidance tactics to make sure in never in a situation where those characteristics are relevant.

But I genuinely think I have avoided being oppressed (even though I have definitely come across people/circumstances that would have oppressed me - if I'd let them).

Pause, think:  If I'd let them….

And that's why I need to check my privilege. How privileged am I if I can avoid being oppressed?

I have a number of non-stigmatised characteristics, some of which confer privileges in contemporary Welsh culture.

·        I'm white

·        I'm middle class

·        I’m well-educated

·        I speak (some) Welsh

·        I may be a woman, but I went to a majority boys independent school where I was never encouraged to see myself as different from the boys

·        I have a comfortable income (courtesy of husband) - oh, yes, there's another, I'm married to a man.

·        I'm not a carer of young children or older or disabled family members.

·        Oh, and I'm Christian – although based on how people react when I say that, I'm not sure whether that's stigmatising or privileging these days!

I think three features of my life stand out as privileged characteristics that over-ride the potential oppression of my stigmatising characteristics and allow me to refuse to let others oppress me:

·        I went to Oxford University.

·        I do not rely on the benefits system.

·        I face life shoulder-to-shoulder with an amazing other half.

The Oxford University thing is so many privileges rolled into one.

·        The one-to-one tutorial system means I was taught to think, evaluate, critique, argue and stand up for my opinion.

·        The majority male environment continued the pattern set at secondary school of seeing myself as one of the crowd rather than ‘a girl’.

·        I knocked about with people who took power and privilege for granted, and who opened doors for me to see inside the powerful elite world of the very rich and very influential. Some of that confidence and assumption that you are worthy of respect rubbed off on me.

·        While I did not consider going to Oxford made me better than others, it was a very useful status symbol to bring out casually when needed. I tried to use it very sparingly. But it meant I got to talk to a senior government official in Hong Kong to sort a problem when a friend (a Filipina maid) told me about an issue affecting her and most of her friends.

Not relying on benefits. That is a huge privilege for anyone with long term mental ill health.

[my internal committee are likely to shoot me if I keep saying that – we would say: ‘for anyone who is neurodiverse’ because that’s the narrative that makes sense to us. It allows us to be powerful in being different, not powerful despite being different].

Back to the “not relying on benefits”. Having income (albeit mostly from being married to someone with a good income) means no debilitating fights with officialdom. No need to focus on what I’m not able to do, and why I’m ‘broken’ so I can fill in interminable forms. No constant fear of something going wrong with the system and being left destitute. No media portraying me as a charity case at best, and a work-shy, cheating, scrounging, fraudster at worst. I can’t imagine the day in, day out grind of negative messages about people who rely on benefits. It was bad enough when I was a part-time wheelchair user. I confess there were times I stayed sat in my chair in public because I couldn’t face another round of explanations, stares and tuts if I stood up to reach the can of beans on the top shelf in the supermarket.

Facing life shoulder-to-shoulder.

I don’t think it actually matters that my amazing other half is a man and that we are married. I think that what matters is that I am facing life with someone by my side. We have committed to each other, and we have honoured that commitment to each other for over 25 years. That level of commitment reduces the fear. It means in the self-doubting moments (of which there are many), I am reassured by someone I trust of the wonderfulness of being who I am. 

Thank you to the writer on intersectionality who reminded me to ‘check my privilege’.

Stopping to check has made me cringe to think of the times I have glibly told other women who share my ‘committee-in-our-head’ way of life that they just need to re-frame how they see themselves (ie think in terms of neurodiversity) and their oppression and stigma will start to recede as people interact with them differently. That might work if you have my privileges. But a new narrative won’t overcome the soul-destroying weight of relying on benefits and facing life alone. I have some apologies to make.

As I go into the future, I will be more aware of my privilege and my responsibility to use my privileges wisely. Privileges doesn’t mean I’m better. But it certainly means I get more doors opened for me.  My task is to get my foot in that door then hold the door open for anyone else who wants to get inside.  I wonder how the PhD can help with that.

Belonging in the academic world

A tale in two parts.

Part 1: They were not my tribe 

(After presenting a paper at an academic conference, December 2017)

I went,

High expectations of belonging.

And they did not reject me

but I could not __________

‘Could not’ what?

Understand? Value? Get? Communicate? Find common ground? Respect? Look up to?

No word feels accurate.

I’m fumbling for the word that feels right.

When I say ‘They are not my tribe’, I do not criticise.

I simply recognise my discomfort, the discomfort of wearing shoes that are not mine.

I can wear the shoes, but there is no comfort or sense of ease.

I need to hunt the shoes that will not blister, that mould to the shape of my feet as I wear them.

I thank the ‘not my tribe’ who I met.

I value them for opening my eyes to things I could not see for myself.

-        my weakness, my arrogance, my assumptions

-        my failure to ‘think thesis’

-        my need for a tribe within the wild west of sociological frontier territory. 

I need a tribe. I am not a solitary animal.

They were not my tribe. And so

I grieve,

I move on,

I keep seeking.

Part 2: Coming home

(Another year, another conference)

Today I found my academic tribe.

It is not a tribe of methodology. It is not a tribe of topic. It is the tribe of the neurodivergent. 

It is my tribe because I don't have to worry about how to present myself. It's where I can be myself among academics. 

I have an academic tribe. I am content. 

The Holding Pen

There's a first time for everything.

I now have a 'holding pen'.

I've finally created a workable structure for the thesis, via telling myself it isn't some kind of mystical intellectual thing into which I must squish everything I have learned; it's just a book for academics - and I've written books before.

I have an archive folder for past versions and things no longer needed for the thesis but that are worth preserving.

I have a folder for each section of the thesis. Most of the previous files have moved either into one of these sections or the archive or been deleted. In a couple of instances, I have emailed information to someone before deleting the file because it seems of value (just not to me) or I love it and can't let go but know I need to relinquish it in order to free my brain for completing the thesis. After all, finding a structure that works is often a case of rearranging the furniture and consigning some to the charity shop, some to the tip and gifting some things you love to someone who will appreciate them more than you. It's rarely a case of going to Ikea* and buying new furniture from scratch.
[*In the interests of balanced blogging, other places do exist for buying furniture - or so I'm told - but they don't have the meatball experience]

I have a new kind of folder which I am calling my holding pen.

This is a folder of things I have written or papers I have downloaded that don't have an obvious role in the new structure but as the writing of the thesis develops it may turn out that they hold useful, even vital, thoughts or citations or pieces of text. They are sat in a liminal space, neither part of the thesis nor ejected from the thesis.

I like the concept of a holding pen. It has a dynamic feel. I can imagine the sheep at market, jostling around, waiting to be moved to their destination, neither belonging to their previous owner nor their new owner but in that moment of suspense between the two.

I've used a Pending folder in the past. But that, to me, implies pressure to deal (and risks a visit from its demoralising sibling of 'failure to have dealt' when anything languishes in pending too long).  It's like the 'in tray' or 'to do list' that stares accusingly at you.

I'm excited for this new stage of thesis production. I'm excited and I confess sometimes intimidated by the scale of the task ahead. I think I'd be less intimidated if I could focus all my attention on the thesis - and if I had somewhere better than the crowded family breakfast table to work. But every doctoral student has their own sources of intimidation, and I will find my way through mine.

At least creating a holding pen has removed the intimidation of the pending folder.

The Venn diagram that maybe isn't

After this morning's joint supervision, I have three categories in my head:

• The story I want to weave for my examiners (ie what goes in the thesis)
• The things I want to write about academically
• Ideas I want to discuss with people* and ideas I want to tell people*

*people = a set of people in the policy world; a set of people in the inclusive research/disability studies/coproduced research world; my long-suffering Barod colleagues

In an ideal world, I can't help feeling that the three should overlap to form one perfect circle, possibly with artistically blurred edges as there are no beautifully neat all-sewn-up stories in the social world - or at least not ones that stand the test of exposure to everyday life.

In my anxious world, I fear that I have three things that do not overlap at all - and, worse, that I have no clarity about what is encompassed by any of these categories. It feels less like 'going down the rabbit hole' and more like 'rabbit caught in the headlights'.

If I think of these categories as distinct but overlapping, I have a Venn diagram.

If I think of them as appearing visually distinct but forming a single entity, I have something closer to an amoeba. 

And herein lies my problem.

Like the 'arms' (pseudopodia) of an amoeba, the three categories won't keep still! Ideas flow within the amoeba creating movement and changing which category any particular thought might be assigned. And any attempt to subdivide an amoeba into its constituent parts are doomed to failure as it is a single-celled organism. 

So...

Time to stick the amoeba under the microscope and take a photo. And then stick the photo at the front of my thesis, along with a photo that magnifies the part of the amoeba that I want to describe and write about within the thesis. 

Or maybe there is another analogy that will carry the weight of the challenge better. I do like the idea of storytelling, and it feels a bit as if I am grappling with constructing a Silmarillion when The Hobbit will do quite fine by itself. J R Tolkien needed to see his mythical world to be able to write his story, but the reader can make sense of The Hobbit without needing to have pre-read the Simarillion. 

And perhaps that is what has happened. Before I could settle to write the story for my examiners, I needed to have a clear picture of my own version of the mythical world I call 'the social world'. 

I have got to stop circling and perfecting my mythical world to my satisfaction and get writing - or at least drawing. Whether it's a Venn diagram, amoeba or mythical world, I need to stop poking around trying to label it and START PRODUCING