Grammar Schools and Special Educational Needs/Disability: An Insider Perspective

Background Information & Context 

If you are based in the UK and have even a passing interest in news, politics and current affairs, you have probably come across a lot of fairly recent discussion about the possibility of a return to the grammar school system as formal education policy.


In case you’re reading this outside of the UK, or are otherwise not totally familiar with the term “grammar schools” – such schools can be defined as “(In the UK) a state secondary school where pupils are admitted on the basis of ability. Since 1965 most have been absorbed into the comprehensive school system.”

Such schools existed within a segregated education system where a child’s options in terms of secondary education were often significantly shaped by the results of an exam at the age of 11.


The system has been widely criticised as divisive on the basis that it privileges some children and limits the opportunities of others, based on performance in a particular exam. It was therefore largely abandoned across the UK (with some exceptions – such as the area where I grew up). However, the current Conservative government has plans to return to a system of state-run selective schools, which have already attracted a lot of criticism, including within the Conservative party itself (see The Financial Times here, The Huffington Post here – and a defence of the plans reported by The BBC here.).

So what do I have to add to this ongoing debate?

Grammar schools and Special Educational Needs & Disability 

Well, one issue that appears to be totally lacking in government policy and discourse around the reintroduction of grammar schools is any reference to Special Educational Needs and Disability (SEN/D) – both in terms of how a selective education system may unfairly discriminate against SEN/D pupils, and of what grammar schools themselves may actually need to do to meet the needs of SEN/D pupils who meet their entry requirements and become their pupils.

This omission led me to seek out any research or reference to the experiences of people with SEN/D who have been educated in grammar schools, and I couldn’t find any.

So I’ve decided to ‘set the ball rolling’ here, by sharing my own experiences as a pupil with SEN/D who attended a grammar school for my entire secondary education (including Sixth Form). Obviously this is one experience – it is anecdotal and the story it tells is impacted by many factors other than SEN/D, as any personal narrative is. I don’t intend it to be representative of anything other than my personal experience – but I’m writing it in the hope that it will make others think, and perhaps encourage those who are in a position to do so to make the topic a focus of some actual research. It seems like such research might make a contribution to the body of literature that already exists on inclusive education (which mostly, in relation to SEN/D, seems to present this term in opposition to the existence of “Special Schools”) – and that given the apparent direction of travel in education policy, a project focusing on these experiences could be topical and timely.

Grammar school & SEN/D – My Experience 

As I indicated above, the area where I grew up was relatively unusual in that it clung to its grammar schools (and continues to do so now.) This meant that, particularly where we lived, options were extremely limited for children who didn’t pass the entrance exam for one of the grammar schools or who didn’t meet the faith requirements for one of the (Christian) faith schools in the town. So I sat the entrance exam.

And I passed.

It was only once I was there that I began to find out about disability – about my disability. (I should add for clarity, that although on this blog I focus primarily on autism, my personal experience of disability in school was all concerned with physical impairment, as I didn’t receive my autism diagnosis until I was at university as an undergraduate.)

I began to find out – to have the very first, early inklings of disability (though, of course it wasn’t called that) in my first grammar school P.E. lesson. There’s a long conversation to be had about school P.E. (Physical Education) curricula and how they inscribe powerful normative expectations about what bodies should and shouldn’t be capable of, but I’m not going to dwell on that here. It just happens that this was one of the first times that someone (a teacher) observed that I couldn’t move my arms the way everyone else could. There had been other medical situations – doctors thinking my arms were fractured on the basis of x-rays following injury, then deciding they weren’t, physio from birth for congenital muscle contractures etc – but nothing that really made me feel that I was different from others and that there were things I couldn’t do because of this difference – as a child I always thought the “things I couldn’t do” were because I was lazy and wasn’t trying hard enough. I probably expected that if I had something actually wrong with me, then someone would have told me.

Anyway – P.E. – I couldn’t throw a netball – which, of  course, isn’t really a problem except in a situation where everyone else can and where that is what is expected, and demanded by those in authority, at a particular time.

And this – along with lots of other issues and complications that have arisen as I grew and as my conditions progressed, led to a lot of medical attention and to me receiving various diagnoses (the latest of which is about a year old now, and is a result of my body finding new ways to misbehave) and to (rare, complicated) names for  the reasons behind the “things I can’t do” – and the related pain, fatigue and personal issues that arise from an unruly body that doesn’t behave like other bodies and won’t do what it’s told.

Anyway – this hopefully gives a sense of background. I was a grammar school pupil, who became medically diagnosed as being disabled (or – “as having a disability” – I was told I shouldn’t call myself disabled as that made it sound serious and bad.)

There are two implications of the grammar school experience for a student with SEN/D that I’d like to explore. The first is concerned with the idea of being “selected”, and what it can mean for an SEN/D pupil, and the second (that I’ll explore in a subsequent post) is about my experience of actually accessing the SEN/D system as a grammar school pupil.

The meaning & institutional rhetoric of being “selected” 

One of the things that happens as a result of selection – and of being selected – is that it comes with the conferring of status as a “chosen one”. Certainly my experience of this fell into two categories – a) You are lucky to be here, there were around 5 applicants for every place and you have one of them. You must work hard to meet our expectations otherwise you will have wasted this opportunity, that could have been given to someone else, and b) You passed the exam, you are obviously more intelligent than average students, so if you fail to achieve higher than national expectations it will be because you have not worked hard enough (this was actually said in an assembly the day before my year group took its Year 9 SATs tests – by a teacher who was also an exam board marker.)

The implications of this in terms of coercing conformity and individualising failure FOR ANY PUPIL are, I hope, fairly clear. In the context of my emerging disability, they meant that even with a medical name for my condition (albeit one that no one has ever heard of) and a letter from one of the top specialists in the country, I still believed that the fact that I couldn’t keep up with work, and that I was spending hour and hours – all evenings and weekends – on homework (or asleep, I get so incredibly tired) was clearly my fault.

I worked hard (while people were telling me I was working too hard, but not offering any solutions in terms of how else I might keep up), was in constant pain, and probably contributed to the already accelerated wear and tear of my non standard joints. Consequently, I have no idea how much work is “enough” or how much pain is “too much” – this means that although there are accommodations or adjustments available, (even when these have to be fought for, they exist, in theory or in policy at least) –  I can’t accept them because I equate needing them with cheating and being lazy. I’m absolutely sure I could do it if I just tried harder (and accepting where I can’t is quite soul-destroying anyway, without external pressure and stigma).

This needs some further explanation though, because it might possibly be inferred from what I’m explaining here, that I’m suggesting having high expectations of people with disabilities, or encouraging a strong work ethic is wrong. I’m not. But I’d explain the nuance of what I’m describing here by comparing the school rhetoric I’ve described above with what I got from my parents and my upbringing. I was certainly brought up to believe (and was told) that I could probably achieve most things I put my mind to, and was encouraged to try new things and to take opportunities. I was also brought up to feel that education is important (although my family wouldn’t be described as “academic”) and that hard work and commitment are morally good things. The difference though between this upbringing and the school rhetoric is that my upbringing came with a safety net. While being encouraged to aim high, I was never in any doubt that my worth as a person would still be valued, and that I’d still be loved and supported, if I didn’t quite achieve. The encouragement came in a context of unconditional love.

Grammar school rhetoric though can never come in that context of unconditional love.

Certainly my experience was that the school was very aware (and fearful) of its need to prove itself. It took the “top 10%” of children from the area, so it had to be at the top in terms of results, and this meant that it transferred the pressure to its pupils. The problem here though, of course, is that this logic is based on a kind of conveyor belt system that equates effort in with results out. For me though, there was no way to quantify the “effort” of managing chronic pain and fatigue in terms of results (work done, exam results achieved etc.) I think Spoon Theory is a good way of articulating what I’m getting at here – but I’m pretty sure that the problems of this equation (effort in = results out) in relation to grammar schools, and the governmental and social expectations of such schools, means that pupils like me are always going to be problems for them, and consequently that there’s a strong likelihood that, at some times and on some levels, we are going to be made to feel like problems ourselves.

As I’ve suggested before in relation to Mental Health Policy, those who support Theresa May and the current government, and who advocate a widespread return to grammar schools possibly need to be honest in accepting that they are happy for SEN/D pupils (including those, like me, who are “lucky” enough to be the “chosen ones”) to be collateral damage. At least then we’d know what we were fighting against.

Disability Politics & Internalised Ableism: Reaching for the Stars with Boots made of Lead.

I’ve been thinking a lot recently about my first experiences of “becoming disabled” (those words are in quotation marks to reflect the fact that although the genetic, physical, psycho-social causes of my impairments have been with me since before I was born, the social “becoming” part was triggered and shaped at various points, predominantly in my teens, and is strongly related to moments of diagnosis. and interaction with medical/educational/psychological/psychiatric and disability-specific employment services.)

I’ve been thinking about this, and how it has been connected with my positioning myself as “disabled” politically, and in terms of advocacy/activism – and some of the things I’ve done as a result of this (NGO research jobs, advocacy/volunteering, event organizing, training and awareness-raising, “support” groups, protests, petitions, angry letters, social media activism).

I don’t really know why I headed in this direction when other disabled people don’t identify in this way, and don’t take this route (I’m not criticizing others who think/act differently in relation to their identities – they’re as entitled to shape and define themselves as I am – I hate it when people criticize how I position myself, and there are other areas of my life that I choose not to politicize because they’re too painful, or because they’re not only my story to tell, so I’m not about to start criticizing others.) I suppose for me though, my way of seeing/doing/being is influenced by the ways in which others fought for me as a child/teenager, as well as having a strong and interesting political and Christian family background (although reconciling my disability politics with my other politics isn’t always easy – others have written on intersectionality and leftwing activism, and they make some good points about ableism in these physical spaces and discourses.)

One of the things I’ve been thinking about though, is how easy it is for us to be influenced (and limited) by the very things (arguments, systems, policies) we’re fighting against.

I’ve spent a large proportion of my life being concerned with disability rights, mostly as the only disabled-identifying person surrounded by allies who care about rights but are not themselves disabled. The thing is though, that in my experience, when we actually have that disabled identity, we generally also have battle scars and war stories about how we’ve had to fight for our own rights (or had others do that for/with us). And in those situations, we tend to hear and be exposed to a lot of arguments about why (seemingly very well-meaning) people just can’t “meet our needs” or “enforce our rights” – Why it might not be fair, but what can we expect? That’s just how it is.

A few of the things I’ve experienced/heard/internalised in relation to myself are:

  • “She can’t do that course, she wouldn’t be up to it”
  • “She can’t have the equipment she needs – You’re just asking because it’s trendy”
  • “Need evidence … need to prove your case”
  • “She can’t have support, there’s no budget”
  • “She’ll pass anyway, can’t expect support just to get higher grades”
  • “Too old for support, but we can possibly bend the rules if we’re lucky”
  • “Not sure if we can accommodate you here”
  • “You have to meet us halfway – be realistic”
  • “It’s like that for everyone. You’ll be fine if you keep trying”
  • “She’ll grow out of it”
  • “You won’t get this amount of help in sixth form/university/ the “real world”
  • “You had adjustments when you took your exams. Your qualifications don’t count the same.”
  • “Disability law is different from other discrimination law because disabled people need reasonable adjustments.”
  • “It’s a shame you can’t access the event where you’ve been invited to give a talk about your work in disability, but unfortunately this is the room that has been booked.” (a local authority)
  • “If the conference is too much for you, don’t come.” (a line manager)
  • “We want you on this committee but can’t change the meeting format to meet your individual needs” (a disability organization).
  • “…medical report to set out what we have to do to meet our basic legal obligations” (a disability charity employer)
  • “That’s because you have autism”
  • “I can’t do a PhD. Autistic people can’t do PhDs”
  • “I can’t have relationships, I’ll never get married. Autistic people can’t/don’t do that.”
  • “Yes, community support might keep people out of hospital, but if they go into hospital they’re funded by the NHS, which saves our local authority funding” (a local authority service manager)
  • “People with chronic anxiety don’t belong in teaching jobs”
  • “Students’ needs come first”
  • “You need to provide medical evidence of your fitness to teach”
  • “Can’t expect everyone to care about something so niche. What’s the universal appeal?” (a university)
  • “You won’t be taken seriously if you act like a single-issue lobbyist.”
  • “Policy is more than just activism”

(N.B. I know these are little things, they’re the ones I feel comfortable disclosing here. I have limits. But also, I’m not trying to play Oppression Olympics or Tyranny Top Trumps – these little experiences drive me to care about the big experiences. It’s not a competition.)

And I think this is something tough to fight against if our hopes and dreams for disability politics are centred on a vision of liberation and equality that takes into account (and, dare I say it, celebrates) our differences – while not using them as an excuse for our oppression. If we’re not careful, we end up actually believing that we’re “lesser” – that people are well-meaning, but society is just organized as it is, and we can’t possibly expect it to change just for us. We can end up arguing from a really weak, instrumentalised position for “better services” and “therapy” – and limiting what we “ask for” because deep down we know that we’re not proper people and we’re just not worth it. Too difficult. Too expensive.

Internalised ableism is something we need to be aware of if we’re acting politically as disabled people. In my opinion, it should NEVER stop us from campaigning, protesting, organizing and telling our stories in whatever ways are available and safe for us (we don’t need to wait to be “fixed” and liberated from our internalized oppression before we try to fight it) but we need to be aware of it, and see it for what it is. When things are done to us, and said to us, and done and said about us, this has an effect. It becomes part of us – it’s bound to. But if we want to work politically I think we can be aware of it without caving in – in the same way that we’re aware of, and respond to physical pain as a symptom – and maybe work WITH it for change.

There will be compromises. We won’t always get what we want. And we won’t be universally agreed with (if everyone agreed, there’d probably be no need for the social change we believe in). But if we begin by framing our activism from a position of compromise we’ve lost before we begin (I’m looking at national disability charities here.)

If we aim for the stars, we might just make it to the moon.

  •  I still feel I’m not a proper person (certainly not a proper woman).
  • I still feel like I’m just an individual failure who shouldn’t expect the world to change just for her.
  • I still feel like I don’t belong, and that I shouldn’t expect to.
  • I still feel like a fraud.
  • I still think/feel/know deep down that there are things I’ll never be able to do.
  • I still worry in case my politics are part of a delusional pathology – or an excuse for my own personal failings.
  • I still worry about costing money if I need adjustments, or when I need to access medical services because of my disabilities.
  • I know that I challenge institutional and societal expectations, and sometimes put others in difficult positions because of this.
  • I still feel like a problem.

Those feelings, that I guess many of us share, don’t go away. No amount of personal therapy is going to fix an unjust world.

But they should never be allowed to dictate and control our activism and our advocacy.

I can’t pretend to have all the answers. I don’t know what we’re heading for.

I just can’t imagine not feeling on some level “less than” – but I don’t think I have to. I don’t think I have to have the “bigger picture” – in fact, I think the expectation of having all the answers is another thing that’s used to keep us quiet (I don’t think those who control the systems against which we struggle have all the answers – they just have power, by which here I mean less of a requirement to account for, and explain themselves.)

It’s one battle at a time, one day at a time. Not having all the answers isn’t going to make me stay quiet.

“If you don’t ask, you don’t get” and, not that I think I should have to “ask” to be equal, I’m going to keep on keeping on even if I don’t really, fully believe that I deserve it – because it’s precisely that feeling of not deserving that I want to stop others like me feeling in the future.

Funny really – it’s totally about me, and it’s not about me at all!

 

Anxiety

This post is ‘in the moment’ and it’s ‘of the moment’. It’s painting my feelings with words – making them real, making marks with them and taming them.

There’s no rhyme or reason to this current state of being. A day of love and sunshine shouldn’t end like this. There’s no trauma, no tragedy. Nothing tangible or named to rationalise and fight against.

It’s a battle, but who is the enemy?

The enemy is a shapeless, shadowy force that is making my stomach churn, and my fingers and toes into ice-cold. It’s making me stare ahead while the world goes past at high speed, tipping forwards, wanting to fall into the void. It’s making me flick my fingers in front of my face and clap my hands in front of my eyes like a seal, although I know people can see. It’s making me stutter and repeat my words like I’m tripping over them. It’s stealing my eloquence.

It’s dark outside. Every light is on here, but it feels dark inside me too. Dead animals by the roadside. Fear of losing control. Fear of failure. Fear of loss. Fear of being alone. Feeling very sick. Memories of feeling shameful, of feeling ugly, growing bigger like shadows on the wall and reaching out to wrap me up. Memories of feeling small – feeling vulnerable, feeling stupid, feeling afraid.

So what can I do?

I can breathe. I can tell myself I’m strong. I’ve been here before. I used to be a resident but now I’m just visiting. I know this will pass. The sun will come out and all this will fade.

I may be anxious, but I don’t need to be anxious about being anxious. It’s okay. It’ll pass.

I can work. Just an hour – exactly an hour, timed to the minute. It’s late. No more than an hour. But I can put neat words on a page. I can tidy and order piles of paper. I’m not spaghetti. I’m straight lines. I can make order out of chaos. I can make neatness and I can wake up in the morning and think of the tidiness. Think of what I achieved.

I’m strong. This is not unfamiliar territory. I used to live here, but now I’m just passing through. I can live and thrive and love life because life is good. Anxiety is a jealous, greedy parasite, but life is good.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“Work-Life Balance” – What are we talking about?

 

I’ve been thinking a lot recently about “work-life balance”.

It’s a topic that is talked about a lot around me, but it’s something that I struggle with – and as I think that much of the reason why I struggle with it is to do with the (intense, obsessive, stubborn, uncompromising), parts of my personality – and the ways of working that come out of that – that contribute to my being recognised as autistic, this feels to me like a “social construction of my disability” issue – and I think that expressing my point of view here in my blog is therefore appropriate.

My Point of View? 

Yes. Entirely that. I am in no way attempting to suggest any overarching, universal perspective on “work-life balance”, or to propose any kind of policy that would work for everyone. Indeed, a big part of my reason for writing this post is to challenge what feel to me like established orthodoxies that seem to do just that, and to argue that the situation might actually be more nuanced.

I think the things I’m trying to challenge can be arranged according to two broad themes, namely:

  • Externally imposed categorisations of activities as “work” or not. And established definitions of “work” – particularly the notion that it must be something unpleasant, or at the very least something that must be separate from “life”.
  • The notion that work is inherently exploitative, and that work, career and (financial) success are linked, to the extent that work becomes a competitive zero sum game where the way in which I choose to work has any (or should have any) impact on those in the work environment around me.

I think it’s fair to assume that we all have different individual attitudes towards, and relationships with work and that these are born of the individual journey we’ve made to get to where we are. But the problem, as I experience it, comes from the fact that when we talk about “work” we may assume a unity of experience that suggests that we are talking about the same thing, when in fact we are not. The two themes I’ve outlined can become taken for granted assumptions that develop the power to shape as well as to describe the social world. Therefore, in explaining my experience and my views here, I’m trying to challenge that assumed commonality of experience by being explicit about what I mean when I talk about “work” – and why this discussion matters so much to me.

And as with so much in this blog (indeed as was its original intention) – I know that I am writing here about well established social debates, and that the position I’m taking is rooted in those that are already well rehearsed in sociology, philosophy, anthropology, politics, I’m not trying to claim originality in terms of those debates (you can probably spot the influences – Marx, Geertz, Hochschild, a bit of Gilbert Ryle) … all I’m trying to do here is to contribute my own (necessarily autistic) perspective.

My Experiences: “Work” in Education

I suppose as with everyone (or, I guess, the vast majority of people in our society), my understanding of, and relationship with the concept of “work” began when I was at school.

In primary school, “work” was easily identifiable, and was clearly labelled in everyone’s talk – we had to do “work” and then after that, we could do something we wanted (though this definitely wasn’t expected to be more work). This distinction didn’t really seem to cause other people any problem, and it certainly went unquestioned, but for me it was problematic – activities that came under the heading of “something we wanted”, that were supposed to act as an extrinsic motivation for doing “work” (and that began to establish the distinction between “work” and “life”) were as follows:

  • Sit next to your friends (I didn’t have any)
  • Choose a ‘fun’ activity (but this cannot be the same as “work” – and neither can it be obsessively lining things up, sharpening coloured pencils, sticking your fingers in taps to experience the sensation of the water, or putting books in alphabetical order – those things are just weird).
  • Extended break time (See the first point in this list – extra break time equals extra confusion and loneliness to be survived).

I wanted to work because I enjoyed it. I absolutely loved learning about history, about religions and ethics, about geography and science – and mostly about language (though never about maths – maths is in fact, always, without exception, “work”!) So right from the start my relationship with “work” meant that I was being different from “normal”. I don’t want to say that I was being different from the other children around – there is a strong likelihood that other children might have felt similarly, but the system was set up in such a way that there was a definite “normal”, and going along with the group, and with what was “normal” was advantageous, so I never got to know if others felt as I did.

Then I got older, and I still loved “work”, but my relationship to it took on a different quality. I was deeply, deeply miserable. The world around was hurting me, and I in turn was hurting myself, and I hated everything about school – except “work”. “Work” was what made it tolerable because “work” (the stuff that happened in classrooms) was pleasurable – it didn’t help me to fit in, because enjoying “work” (and being seen to be good at it) doesn’t go with the script – it doesn’t fit well with the competitive, zero sum theme that I mentioned above – so the script dictates that the way to fit in socially is to complain about work and imply that you’re keen to avoid it (as training for an adult lifetime of alienation).

But I couldn’t give up “work” in order to fit in. I just didn’t have it in me. When you’ve experienced the exquisite elegance and sheer poetic beauty of German syntax for example, and when you’re using the technical skills to actually create that beauty – or when you read something and it speaks to you, and those “penny drops” moments happen, when something shifts in your understanding, and the learning you’ve managed through “work” has brought you to a new relationship with the world – why would you give that up? And why is it defined as “work” – as something to be got through so you can get on to the good stuff? Funnily enough, my obsession with German grammar features in my autism diagnosis. I wonder whether all obsessive interests would have been treated equally here (A sports team? One’s own children?) or whether the division between “work” and “life” actually plays a part in how obsessive traits in autism diagnoses are constructed. I don’t know the answer to that – but I’m wondering.

I remember vividly at the age of sixteen (peak social misery as far as school was concerned) deciding that I was going to stick with “work” over “being popular” because “work” would stay with me longer than school did. What saddens me is that that had to be a choice.

“Work” outside of education

So, having done school and university – and via some jobs that very definitely were “work” (and required financial motivation for me to do them), I got to be properly a part of the adult world of “work”. For me this meant, and I think for me it HAS to mean, spending my time doing something that is:

  • Both intrinsically rewarding (I just can’t give up that ‘high’ of learning through “work”), and –
  • That seeks to make some kind of difference in the world (I guess I just don’t want other people to be as miserable, lost and lonely as sixteen year old me).

Those are what I care about when it comes to work. Those are the things that have to come first, and that is the script that I’m working to when I talk about my own adult experience of “work”. I’m not naive or stupid enough to take the financial aspects of “work” out of the equation – society is set up so that financial survival and work are intrinsically linked, and of course I need a certain amount of money to survive – but having done work that has made me ill (and that was comparatively poorly remunerated anyway), and having been sick and unemployed I know a lot more about what makes me tick. I know the place that passion and obsessive drive have in my life, and I know that I can’t function without them – no matter how great the financial reward.

None of this sounds particularly problematic – I could quite easily just carry on working to my own agenda, and doing my own thing.

But the problem comes when my script doesn’t fit with the scripts of others.

I’ve felt this mostly in jobs where I’ve been told by managers that I’m working too hard (when in fact I’m often just keeping quiet about when I’m NOT working because taking a nap or going for a swim in the middle of the afternoon to give your brain a rest have no place in the world of 9 to 5). When I’m told that my working differently – particularly sending emails “out of hours” (which are actually my best times for getting things done) is unfair as it puts pressure on colleagues because I apparently give the impression I expect them to respond “out of hours” (I’ve never said that), and it might create for others a false expectations about our service and what it offers.

The thing I hate most though, is how the script of “work” as being about career, about progression, about financial success and about status commodifies obsessive passion. I hate how when I was enjoying “work” at school this was interpreted as me trying to be better than everyone else. I don’t want to be better than everyone else, I just want to live alongside them and do my thing. And how in adult life, when I talk about “work” in a joyful way, this is either just seen as odd, or is interpreted as me doing what I’m doing in order to try to gain favour with those in power, and to get ahead and achieve status. The status parts of PhD make me intensely uncomfortable for that reason – I don’t want to be noticed, I just want to do what I’m doing because it’s fun and I care about it. And I get really uncomfortable talking about being passionate and exposing this in an institutional context, because it feels like to do so makes it somehow less – like expressing it makes it part of that commodification, and it’s too important for that.

I want to be able to do my work in its own terms – in the same way that it’s possible to take delight in swimming without striving to be an olympic champion. That’s my script, I know for certain that it won’t be the same as other scripts, but I offer it so that whoever reads this blog can compare and contrast it with their own scripts, and see how we fit and how we differ, and what this might mean for how we can “work” together in our shared world.

So, what now?

As with so much in life, I don’t know that I have any definitive answers for social change beyond what I’ve expressed here (if they were so easy, they’d probably have been taken care of by now). I do certainly recognise that need for change at a societal level. I’m well aware that the neoliberal capitalist society in which we live can be – and is, in far too many cases – abusive, exploitative and cruel, and that the fact that I’m not working to this script doesn’t make it any less real in the lives of other people – but I think that locating the search for change within the individual (“you work too hard, you need to change your behaviour” – or “you are not working hard enough/properly – you need to change your behaviour”) and then setting individuals against each other (“you working like that creates unrealistic expectations about our service” or “you working like that is not fair on others who have children or other caring commitments”) is not the best way to challenge that abuse.

In much the same way as I argued against the individualisation of “Imposter Syndrome” (here) I think that it lets the systems and structures that drive this abuse ‘off the hook’, it commodifies and then devalues passion, and in my own case, as my ways of working are so inherently linked to what society understands to be my autism, this individualisation actually contributes to my disablement.

All I can really do with any certainty here though, is emphasise how important this debate is to me. At the moment, my PhD and this way of working are giving me so much –  opportunities to do things that I care about hugely and that feed my passions, but also making me feel that it might be alright for me to “be me” – that my obsessive intensity isn’t automatically something problematic to be hidden, fought against or laughed at, but that it might actually, truly, really be used positively without being twisted and weakened. This feels tentative and uncertain, I’m still not sure I quite believe and trust it, and I certainly don’t want to negatively impact on anyone else by being in this position, which feels like my own personal liberation – but it’s such a powerful thing, I don’t want to lose it.

Why I’m unhappy with “Imposter Syndrome”

So, I may have mentioned that this blog is likely to be a pile of contradictions – and that I might end up changing my mind, or refining ideas about things as I go along.

Well, this is one of those times …

I wrote a blog recently about how I feel that my autism diagnosis makes having confidence in my ability to do my PhD really hard (it’s here if you’d like to take a look). In the post, I mentioned how frequently the term “Imposter Syndrome” was used to describe how often people don’t feel like they ‘fit in’ in academia – that they don’t feel good enough. I tried to explain how having an autism diagnosis, with all that this involves, makes this even more tricky.

Well, my blog was picked up and retweeted by Susan Oman, who is researching wellbeing, including in relation to PhD experiences (you can check out her work here). What was particularly interesting was that in retweeting the blog link, the phrase that Susan picked up on was “I feel like an imposter, but not just that, I feel like an autistic imposter.”

And this is really how it felt to me when I wrote it – like all PhD students experience ‘imposter syndrome’ but being autistic makes this even more of a problem.

So why am I questioning this now?

Well, since I wrote the blog, I’ve been thinking about, and speaking to others about how the notion of ‘imposter syndrome’ actually works, and it occurs to me that the phrase, and what it implies, might not be helping.

What I mean by this is that I had been thinking of ‘imposter syndrome’ as something that affects individual PhD students – and that my individual experience of autism meant that my version of ‘imposter syndrome’ was different/worse/whatever than that of others. Well, the thing is that I do still think this might be the case to an extent – and I don’t think that those who aren’t autistic can understand what it’s like, or can know about it. I do still feel that, but in the past that’s made me quite protective of it, and quite “parochial” (I guess) about the specialness of autism and of autistic experiences.

I didn’t want it to be lumped together with other types of individual experience because how could others possibly know about autism? (Which was my individual experience, and the overriding cause of my ‘imposter syndrome’). So it shut off my thinking about other types of individual experience – people who experience ‘imposter syndrome’ because they are trying to do PhDs and balance childcare commitments, because they have come to academia via a ‘non traditional route’, because they are older than the ‘typical postgraduate’ – or all the other hundreds of thousands of ways that people can feel that they don’t fit in with the model of what a ‘proper PhD student’ should be.

It set me apart from them because the term locates ‘imposter syndrome’ in the individual. It sets it up as an individual ‘problem’ for the individual to overcome.

But I’m not happy with that. Because locating the issue within the individual makes it into a ‘personal’ struggle and creates some kind of hierarchy (“my experience is worse than yours because I have autism” or “your experience is worse than mine because you’re from a Working Class background”). It also has the potential to locate the cause of the trouble in individuals – individual supervisors, individual departments. And this in itself is something that makes raising these issues very problematic for those of us who actually have good relationships with supervisors or with our departments. Indeed, this concern makes it feel troubling for me writing this now, because it feels like it would be so easy to infer from my attempts to absolve myself of any individual ‘blame’ for feeling like an ‘imposter’, that I am attempting to lay the’ blame’ on other individuals. But it’s absolutely not that. I have a really great supervisor and I like the department I’m in. The issue is a far deeper cultural one than that, and I think it goes beyond individuals and is historically and culturally rooted.

So I think that this individualisation of ‘imposter syndrome’ lets the wider systems and structures that lead people to feel that they don’t have a place within academia ‘off the hook’. And really, seriously, if this phenomenon is so widespread, across so many different types of student, different institutions, different academic disciplines – then maybe, just maybe the problem is not an individual ‘syndrome’ but a structural issue. Maybe the focus for change needs to be on the concepts and practices, the systems that are creating the conditions for people to feel like outsiders in a place where they have earned the right to be.

And I don’t feel that talking about ‘imposter syndrome’ really gets us to a place where that is our focus for change.

I don’t pretend to have definitive answers for change, but I do want to be part of something that makes change happen – that makes academia a more inclusive place to be, so that those of us who are ‘non mainstream’ can make meaningful, recognised contributions in a way that does not push us to the brink of breaking, or beyond.

My reasons for this are clear and unashamedly partisan – as an autistic woman, I feel that I need academia. I need to be able to go beyond my own personal experiences and understand how the world works around me. I need to learn, and I love to teach. I also feel that I have something to contribute. I’ve worked really hard to get where I am, and so many people have helped me along the way. But being part of a community means you have a responsibility to it, and to help to shape it, and that’s what I’m trying to do from my autistic perspective.

So the one thing that I feel like I can offer at this point is the suggestion that maybe we should reconsider the language of ‘imposter syndrome’ and begin to talk about something that locates the problem outside of individuals so that we can begin to work within and change a system that actually makes the majority of us feel like ‘imposters’ at some point. Maybe we need to shift our focus much more firmly to ‘hostile spaces’ or ‘hostile cultures’ in the PhD experience and in academia more widely (of which the PhD is a formative part). Because that’s where I think change needs to happen.

 

“I can’t do this bloody PhD. I’m too bloody autistic and too bloody stupid.” Doubts and Hope when Identities Collide.

I started writing this post earlier in the week, when work was feeling hard, and I was feeling pretty low. I thought I knew what I wanted to say here – but then this weekend, a ‘thing’ happened on Twitter that has made me rethink how I feel and has very much reshaped this post.

The ‘thing’ was a conversation among autistic people under the hashtag #illogicalsocialrules. I found it this morning and it’s been quite powerful in helping me to rethink how I see myself as an autistic PhD student studying “social”. So I want to explain why.

Firstly though – the background.

The title to this post is what goes through my head whenever anything feels difficult – when I can’t say exactly what I want straight away, when I feel overwhelmed, when doing a PhD feels like eating an elephant. It’s tricky to explain, and probably falls into that category of “things I feel I can’t say”, because it seems like everyone finds doing a PhD difficult at least some of the time. There’s loads written about ‘imposter syndrome’, and loads of sharing in departments and on forums, about how feeling like you can’t manage, feeling isolated, feeling like an ‘imposter’ is totally ‘normal’ and to be expected. I know the intention of all of this is to be helpful, but as with so many things in autistic life, being told ‘it’s normal’ and ‘you’ll be ok’ doesn’t get at the problem, and actually shuts down any real discussion of the situation. So I need to try to explain how this is for me, and where I think autism fits into this explanation.

The thing about autism as I experience it is that it’s about being neither one thing nor the other.

I have a diagnosis that lists all of the things I can’t do (that I’ll share on here when I finally track down a copy). A neatly typed bundle of failures that is supposed to help me. I have gone through all of the clinical literature and read the  articles that appear almost daily, discussing all of our deficits and all of the hopes for a cure for our muddled, dysfunctional thinking. I know all of the theory around weak central coherence, poor executive functioning, rigid thinking, poor planning and problem solving, deficits in social communication, poor receptive language processing, sensory dysfunction. And I experience all of this – that’s how I come to have the diagnosis, that’s how I “count”. (The current DSM criteria for Autism Spectrum Disorder are here if you’re interested – so many failures and abnormalities!)

I also have years and years of being immersed in an autistic community of firsthand narratives detailing what we can do – sharing successes and proving how ‘normal’ and ‘capable’ we can be. I’ve read the articles on ‘5 ways in which my autism helped me get my PhD’, and all the stuff on how our neurology is a ‘natural human variation’. I’ve seen a huge increase in recognition of how autistic women live – and that feels very different from when I was diagnosed, very positive progress.

The thing is though, that none of that helps when I doubt if I can do my PhD – or when I doubt myself more generally and feel like a broken human being. All the deficit stuff, the “proper” clinical stuff is so strong and dominates my thinking – it feels so authoritative, so confident, and it fits with how much of a failure I feel. So it confirms it. I feel like an imposter, but not just that, I feel like an autistic imposter. How on earth can someone with all of that long list of deficits possibly think she can do a PhD? Every time I think about it, the conclusion I reach is “Maybe this is just as far as an autistic can get – maybe autism just makes this impossible”. And the thing about this type of thinking is that it becomes a self-fulfilling prophecy – the doubting robs you of your productivity because being so afraid of confirming your failure means that you can barely bring yourself to try.

But I don’t WANT to accept that. I refuse to accept that – because when work is good (as it is just now) it’s the most amazingly, addictively good thing in the world and I will not give that up.

So how does a twitter hashtag like #illogicalsocialrules help with all of this?

Well, to be blunt, it helps me find my place, and it helps me to identify my tribe. My own interest in “social” has sat uncomfortably with an autistic identity that risks erasure if it is seen to be too aware of other people, and of “social”. One of the reasons why those “5 reasons why my autism has helped me get a PhD” articles don’t help me is because they tend to orient towards stereotyped forms of autism that I don’t have. They describe highly routined autistics working in maths and science fields in ways that would make Rainman proud.

But that is not me. My passion is language – all kinds of languages – words, words, words. And how words happen between people. I love watching people ‘act’ in order to be ‘social’. Sometimes it grates because I’m so aware of it and it looks fake and cringeworthy, but it’s what I’m tuned to. In my own language and in other foreign languages – I love spotting patterns and nuances. I’ve had to. But this is just so “unautistic”. We’re supposed to have deficits in social communication, so it’s always felt like I have to choose between an autistic identity (which I need, when the sound of a hand dryer paralyses me, or I’m terrified about going somewhere new because I don’t know what to expect), and an identity that loves language and observing and dissecting the “social” (though might not always “do it right”).

And right there – in that hashtag, there’s a whole group of other autistic people doing exactly what I do. Being autistic and examining the social – sometimes amusingly, sometimes critically, but USING the ‘outsider’ position, and all of the observations that go along with that as a SKILL to pick apart and analyse that which I guess many neurotypicals would take for granted because they’ve never HAD to study it.

So maybe it is entirely possible to be autistic, with all that that means, and to be good at observing and studying the social. Maybe those two can go absolutely, happily, hand in hand. And maybe it’ll all be alright after all.