What I did at Autscape (including some “added extras” from my recent interview with Scottish Autism on Autistic Advocacy)…

This week (27th – 30th July 2020) is Autscape 2020 – For those unfamiliar with Autscape, it is an autistic “conference”. Usually it happens in a specific area of the UK (often in a school or university campus that is closed for summer, and that can offer accommodation and facilities for a large group of people relatively affordably). It features talks, activity sessions, discussions, and social opportunities around aspects of autistic culture and politics – with a focus on autistic liberation activism – an intense and heady experience of full-on hit-you-between-the-eyes autisticness. Each year has a specific theme that ties all the sessions together – this year’s theme is “Vision”.

This year, for obvious reasons, Autscape has gone online, using multiple platforms: primarily Zoom for hosting talks and some activity sessions, and Discord (a server-based social platform) for the social and community dimension of a standard Autscape. I am beyond excited to have such an accessible, engaging autistic space right in my flat, and I have decided to “live-blog” through the week. Basically – this means that I will be blogging as I go, summarising each event or session I attend, as well as my overall thoughts and impressions, and I’ll publish an edited version of the blog each evening. I will then sometimes publicise the blog in other parts of social media.

So, here we go…

Friday 24th July 2020

I am so grateful for Fergus Murray (@MxOolong) for prompting me that Autscape is online this year, and that booking closes tonight at midnight. I checked out the programme and snapped up my ticket – probably the best £20 I’ve spent in a long time!

Sunday 26th July 2020

I’m getting so excited for the start of Autscape. This evening, I logged onto the social server on Discord. It was set up so that when you log in for the first time, you’re taken to a registration “room”, where you are asked to provide a code on your ticket in order to gain entry. This has to be “manually” checked by a moderator, and as it was later on Sunday night, I expected that I might have to wait until Monday morning to be validated, but this actually happened instantly. A combination of a very efficient (large) team of moderators, the international nature of the event (meaning there is basically someone online 24/7), and the fact that autistics are notoriously erratic sleepers means that all bases seem to be covered when it comes to moderating the server. So, I found my way into the server-proper, and had a look around. It was a bit overwhelming at first – but it brought back fond memories of autistic activism “back in the day”, before we were all on Twitter etc, when we were all connected via dedicated servers, forums, message boards, and mailing lists. It was great to see so many familiar names and I messaged a couple of friends. I chatted a while, and joined some of the “rooms” (topic threads) that interest me (crafting, music, animals, LGBT, and books) – fantastic places for autistics to be together and “info-dump” and “geek out” about our favourite obsessions.

That is the particularly joyous thing about this server. Not just the content (info about Autscape and a crack-team of moderators staffing the help desk, as well as a bunch of comrades ready to help you out if you’re lost or struggling. But also, the whole “vibe” is autistic – you can say things without worrying about how it might be (mis)understood, or that you’ll reveal yourself as weird or freaky for saying it. Even down to struggling with the feeling of overwhelm at being part of such a big event, and your concerns about the practicalities of balancing participating with taking care of the basics – like eating, sleeping, and everyday responsibilities – alongside intense hyperfocus on the conference. No risk of people who aren’t autistic minimising your concerns with “oh, it’s like that for everyone” or “I’m sure you’ll be fine, you’re more capable than you give yourself credit for”. Just people who accept you. Don’t get me wrong, while I do think that the word “authentic” can sum up autistic social spaces often much more readily than it might non-autistic ones, and there is often a bluntness and a transparency to autistic interactions that is not typically characteristic of neurotypical ones (in my experience), it is still the case that there are “bumps” in autistic social spaces, and the needs for concern with “presentation of self” and smoothing rough edges that characterises any human societies and social interactions. But my feeling is that these happen free of the overarching assumptions that can frame autistic experiences in neurotypical environments – where we’re automatically the ones in the wrong, and when our dispositions and ways of doing and of being are taken for granted as being a “deficit model”.

I’ve always known that autistic “community” is an invaluable part of my life. It’s enriching and validating in a way that is hard to put into words without going into detail about the painful, isolated ways in which I experienced the world before I “found my tribe”. There used to be a common belief – and I think it is still common in some “professional” circles – that autistics should be kept apart, because of the fact that when we get together and spend time in each other’s company our “autisticness” becomes more pronounced and more obvious to outside observers – we flap, we stim, we spin, we rock (oh yes, we rock!), we info-dump, we are often more comfortable using “alternative” modes of communication, and other ways of making our sensory and social worlds more tolerable for us. And, of course, this can be worrying for “outsiders” – for the parents of autistic children, who think it means their child’s autism is “getting worse”, and for “professionals” who take it to mean their strategies are failing. But to those of us who feel it, I think it represents liberation – and happiness. I sometimes lose sight of how much I need those spaces, and I’ve always needed to dedicate specific times to reminding myself of that fact. For many years, the Autism Residential Study Weekends at ACER (University of Birmingham) fulfilled a similar role in my life – and enabled me to go on with my work in sometimes rather isolating environments, while remembering that I was part of a community doing similar work all over the world. I think this Autscape is pointing me in a similarly sustaining and enriching direction – and I’m glad of it.

Monday 27th July 2020

Today has been the first full day of the Autscape schedule, I have had a great time dipping in and out of the events and social spaces alongside my work and other commitments.

I got off to a brilliant start, by listening to Yo Dunn’s seminar: Envisaging the Future of Autistic Activism. Yo is someone I’ve wanted to come across for a long time as I’ve been aware of some overlaps in our interests around autistic activism, social science, education, and (public) law – particularly regarding the Mental Capacity Act 2005 (check out Yo’s website here), so this was a brilliant opportunity. I was clearly not alone in feeling excited about the topic and the chance to listen to Yo, as there was a total of 165 participants at the seminar. That thought in itself gave me joy – the idea that so many of us, around the world, had come together to think about autistic activism – wow!

Yo’s talk, which lasted a little over 45 minutes, was a master class in strategic activism. Accompanied by comprehensive handouts (downloadable in advance from the Autscape Events Calendar, and then shared by Yo during her talk), and peppered with (optional) interactive moments – including polls and invitations to answer questions by text in the “chat” box on Zoom, the talk covered key issues, such as:

  • Which areas of life particularly impact autistics? – Thinking outside of the “Autism World” (examples included social care, mental health, education, money/welfare, decision-making rights, law enforcement, employment). The need to go beyond the “Autism World” echoed my own experience exactly – of how being (apparently) the only autistic in social spaces, and working and researching in areas outside of Autism Studies (having completed my Autism Studies postgrad qualifications) have given me opportunities to develop my thinking and my advocacy in a way that has often been challenging, but that has enabled me to grow and to be of more use both to my autistic community, and to society more broadly – a point that always brings to mind for me the quote from C.L.R. James: “What do they know of cricket, who only cricket know?”
  • The role of key elements of law and policy (considering laws and policies of particular relevance to autistics, and how these can be influenced).
  • Developing relevant knowledge and expertise – this included an insight that really resonated with me, about how we need to go beyond knowledge we can find in books (or, I guess, online) – to find out how things work “in the real world”. This chimed because it is at the foundation of my choice to move away from doctrinal legal study, and focus on socio-legal research into how law (such as the MCA 2005) works in practice – most recently with the Open Justice Court of Protection Project that I co-founded with Celia Kitzinger (click here for our website). But it also raised an issue that I have personally found challenging: the fact that a lot of the methods of acquiring such knowledge are not necessarily immediately accessible to autistics (and raise political questions about the extent to which we should “act neurotypical” in order to conform with neurotypical social expectations). I felt this quite acutely while I was doing my ethnography of the Court of Protection – it seemed bizarre that I was doing such a “social” form of research, but at the same time, I have a tendency towards accuracy, thoroughness, and attention to detail that all served me well in that endeavour. As with most things, my autism in that context brought both advantages and disadvantages – this is no great surprise, but it serves as “real world” example of how social understanding of, and attitudes towards autism may be (should be) reframed away from the current entrenched deficit narrative. These are methodological considerations I would like to pursue post-PhD, and I hope they might bring further opportunities for me to combine my passions for autistic activism and social research.
  • Mapping policy processes – Yo outlined two approaches that are useful here: Top-Down (asking how policies get made, who gets to influence this, and how), and Bottom-Up (beginning with a social concern and tracing effective routes to achieving change).
  • Yo also covered a range of points that it is easy to forget, or of which we can lose sight in our daily lives, work, and activism – things such as considering how we use our (often scarce) resources to best effect – Is it worth our effort? How to make allies; how to “get a foot in the door”; how to develop and maintain credibility; and how we, as a community, should build, evaluate, and take forward effective proposals in the pursuit of change.

I loved this talk. It reinforced and broadened my own political experiences in autistic politics and activism (like the things I used to think about on my Questioning Aspie blog). I’m looking forward to contacting Yo outside of Autscape and further discussing our respective work interests – networking autistically!

The second event I attended today was a discussion session – Activism: Making our Priorities Visible. This was another popular session, with (at least) 133 participants. It was interesting, and intellectually nourishing, but also slightly challenging as the use of technology for managing interactions with such a big group was clearly a new experience for many of us. However, it was clear that the chair, hosts, and tech support were taking careful note of issues raised, and promise to address them for future similar events.

The session lasted 50 minutes, and involved the use of (around 20) breakout rooms to facilitate small group discussions, before all joining back together. The three questions addressed across the session were:

  • What do we think are the key issues affecting autistic activism currently?
  • What solutions might we offer?/How might we change autistic activism for the better?
  • How can we make activism accessible to more of our community?

I was happy to find myself (randomly) assigned to the same group as Yo Dunn, and as some other familiar faces. It was great to meet up again with Leo Capella, for example – with whom I worked as a consultant several years ago on a project for the Autism Education Trust. Our conversation ranged across the legal and political tools at our disposal for activism – including the role of (non violent) direct action, and included international comparisons and ways of building cross-cultural solidarity and mutual aid. And we talked a lot about our knowledge and experience across other civil rights and liberation movements, and the need to learn our history and avoid “reinventing the wheel”. At the end, we were asked to “sum up” our position in a way that could be fed back to the whole group. I came up with the following, which others endorsed: “Our activism needs to stand on the shoulders of giants, but also meet our needs. The work is in learning our history and making it work for us”

Something that impacted me personally was my decision to communicate throughout the discussion by typing, rather than talking. This is something I often do in autistic spaces, and otherwise when it feels “safe” to do so – especially when I’m tired and at risk of sensory overload. For many people who know me, this might seem like a strange choice, as I’m generally recognised as being a very talkative person, who is articulate and outwardly confident, and, if anything, struggles to hold back. But this is a perfect illustration of the trouble with what we increasingly recognise as “masking”. I can talk (as in, I am physically capable of producing speech), and I live in a society that prioritises speech as one of the “normal” ways of interacting – with text-mediated interaction being positioned, in many contexts, as “alternative”. And as a result of these two factors, I generally talk. However…talking is clearly not something I am designed to do easily. And talking to people generally causes me to feel a physical sense of panic (cortisol rush, temperature increase, stomach churning etc) that results in extreme fatigue, and acute pain – including excruciating headaches. I also find it immeasurably more difficult to follow what is being said, and especially to identify and analyse contexts and “read between the lines” – I just have to hang on, and respond as best as I am able, in the time allowed. I’m generally quite good at doing this, so most people would be unlikely to see how difficult it is for me – the cost is all borne by me (invisibly, because I very rarely let people see me when I’m recovering).

And I go along with this – not because I want to look “normal”, or because I think negatively of people who use Augmentative and Assistive Communication technology. But because, just like the experiences of most ambulant wheelchair-users, I’ve internalised the expectation that if I am in any way able to perform a task in the more socially accepted manner, this is what I should do. Otherwise, I’m “lazy” or “difficult” or “drawing attention to myself”. But that is nonsense – it’s the message I have always been given by those with the power to determine what assistive technology I am allowed to use (such as the LA Official who told my parents when I was at school that he didn’t want to allow me access to a laptop to minimise the excruciating pain I was experiencing from writing – because “children think laptop are cool, like we used to feel about calculators”). But it is nonsense. “Normal” people drive or take public transport, despite being perfectly able to walk; people use labour-saving devices to make home tasks easier than they would otherwise be – washing machines, irons, cookers, vacuum cleaners are just some such devices I can see from where I sit in my flat, and not one of these singles out my flat as a place where a disabled person lives.

So, as well as being a fascinating discussion, and a great chance to socialise (yes, really) with people whose company I really value, this Discussion was another opportunity for me to check my own perspective, and reflect on some of the assumptions that can lead to me making life more difficult for myself, by allowing society to dictate to me the “right” way of doing things. I don’t want to stand for that anymore – there are enough ways in which life is challenging and exhausting enough for me. I have to expend so much energy on “everyday” tasks. I want to be able to save as much of my health, and as much of my energy as I possibly can, to do work that matters. That in itself feels like a political priority. And if that means that sometimes I take the opportunity to type instead of talking, then that’s what I’m going to do.

Tuesday 28th July 2020

Today’s sub-theme (within the overall Autscape theme of “Vision”) is “Visions of Community”. Autistic Community is a passion of mine, and a big part of my life. I know autistic people who do not engage with the idea, and who actively dislike the idea of forming community around something they view as individual and personal. I have also been told at various points in my life that “Autistic Community” is inherently oxymoronic – because how can social deviants form community? I (of course) respect the former position as an exercise of individual autonomy, but I have no time for the latter and I am glad that it is increasingly being proven to be demonstrably incorrect. Today’s theme and planned events are one part of that manifestation.

I began this morning by sitting in on Caroline Hearst’s seminar A vision of Autistic Community. Caroline (@carolinehearst) is founder and director of Autangel (their website is here) – an autistic-led Community Interest Company based in Reading. I have known Caroline online and in real-life for a couple of years, and was looking forward to listening to what she had to say.

The session began with some polls on the theme of Autistic Community:

Do you feel you are part of an autistic community/communities? (The result of this was 69/31 “for” – although there was a lot of discussion about the need for a “sort of” or “perhaps” option – so often at Autscape, autism is demonstrated as well as discussed, and this was one such example. Clarification and equivocation are a standard part of how many of us address many questions).

Was your first contact with autistic community via autistic-led or non-autistic organisations? (The result of this was marginally in favour of “autistic-led”, with the caveat that given that the sample was made up of autistics attending Autscape, it is quite likely non-representative of the population more broadly. For myself, I have a hard time remembering my first (known) contact with other autistics – but I figure it was likely through non-autistic organisations, like the charities and other organisations I’ve worked for and been involved with. Although I “found” online autism very early on in my “journey” – though this was while we were still using Listservs, forums, message boards etc).

What about your current contact with autistic community? (Autistic-led/non-autistic/purely personal/non-existent) – multiple options were possible (Here, autistic-led was much more popular, getting 73% of the vote. It was followed by “purely personal” with 57%, then non-autistic and non-existent with 25% and 6% respectively).

Finally, If you are part of an online autistic community, where is it located? (Twitter/Facebook/Email List/Other) – multiple options were possible. (Facebook was much more popular – getting 65%. Followed by Twitter with 35%, email lists 31%, and 51% for other. Caroline acknowledged that the options available were rather limited, and shaped by her own experience, so that may account for the popularity of “other”. I would like us to have a “Directory” somewhere, so we could choose what forms of community may work for us, and “newbies” can test out different platforms and see what works for them).

Caroline then shared some ideas before explaining a little about the development of Autangel (which you can see if you check out their website). Some key points/reminders I took away were the following:

  • She used the “Ugly Duckling” story to illustrate the experience of growing up autistic in a predominantly NT world. This is one I also use in training, It resonates personally.
  • Social spaces and experiences are influenced by factors that are not inherently social – e.g. sensory needs.
  • Sometimes our needs can “clash” (she illustrated this with a cartoon of two characters – one is saying “it makes me uncomfortable when you flap your arms like that”, and the other replies “it makes me uncomfortable when I don’t).
  • Autistic people are often characterised by intensity/extremes.
  • The autistic population is characterised by pronounced heterogeneity (“one thing that’s the same among us is ironically being different” – I liked that).
  • She talked about the need for diversity – and space for different ways of being and doing. A part I particularly liked was her accounts of finding she had not personally liked the ways in which other organisations had done things, so she had built something new. This is something I’ve experienced, and I really value activism that is generative, rather than that which tears down other people’s work. I think we can get “hung up” on a quest for a single, homogeneous “voice” – when actually, if we can make room for more options, we built systems and organisations that are more likely to be useful to our wider community – and able to address the spectrum of oppressions and challenges we experience.
  • Caroline also discussed practical strategies, and examples of things that have worked in her experience. She suggested establishing ways of working, and having in place pathways for mediation in case of conflict or disagreement. This prompted me to reflect that one thing I’ve noticed to be a difference between autistic and NT organisational styles is that we often like to get things “set in stone” from the outset, rather than tackling problems when we encounter them. For myself, this is generally because I would rather avoid the stress of conflict, and the anxiety of “making a mistake” if I possibly can. I wonder what other people’s thoughts and experiences are on this?

This talk was a nice mix of theory and experiential observation. It gave me food for thought, as well as affirming lessons I’ve learned on my own activist journey so far – including those I’ve learned the hard way. I guess this is part of the beauty of activist spaces like Autscape, we can share ideas and experiences among ourselves so that hopefully others can learn from our mistakes. Although I do know for myself that sometimes I have to experience a challenge in order really to appreciate what I can learn from it. Other times though, I’m glad if someone who’s already been there can save me the bother!

This evening, I listened to a talk by grassroots activist and neuroscientist Vivian Ly (@viv_ly_mw), titled Collective Community Care: Dreaming of Futures in Autistic Mutual Aid.

A common feature of both of the sessions today has been that I began them while eating a meal I’d just finished making. This is a particular accessibility feature of online Autscape for me – My organisational and time-management skills are pretty abysmal, and being able to take care of the basics of life while not missing out on events I want to attend is just brilliant.

It’s likely not a surprise to those who have followed my work on the Autistic Mutual Aid Fund (open here for donations and applications!) that I should be really drawn to a talk on Mutual Aid. It is a passion of mine, because I view it as being a necessary foundation of a politics of autistic liberation – based on my own experience and thinking, and on the fact that no oppressed person or group was ever handed liberation by their oppressor(s). It takes work!

Vivian’s talk covered the politics and theory of Mutual Aid, with reference to her personal involvement with Vancouver Queer Spoon Share. There was also lots of chat among participants – though unfortunately this was split over (at least) 3 platforms that made it rather difficult to follow, and quite inaccessible to some participants. From what I could see, some of the discussion involved trying to establish examples of what constitutes “Mutual Aid” – I would have liked to hear more from Vivian on what she thought of that. There was also some sharing of experiences and international perspectives, as well as reminiscing – and, again, it was great to see some really familiar names. Here are some of the points from Vivian’s talk that stood our and/or resonated with me:

  • Roots of Mutual Aid and Community in Disability Justice (and interweaving with colonial and other oppressions). I think we need to work hard on how we articulate and manifest our understanding of the shared and common experiences of oppression across oppressed groups, while also being clear about the nuances, the inflections, and ensuring that each group has “space” to express its own experiences and perspectives.
  • Community/Mutual Aid as non-hierarchical, non-bureaucratic – horizontal structures – “solidarity not charity”
  • Compare and contrast with “self-care” (that can obfuscate needs of some people for support with caring, and can deny collective responsibility).
  • The “control” embedded in much State “care” (e.g. poverty cycles)
  • Scope for Mutuality to challenge societal views of disabled people as “burdens”, and always in receipt of care (though I think we need to be aware of how social systems and bureaucracies can limit this – e.g. by disability benefit systems that penalise disabled people who are also “carers”).
  • The self-advocacy potential of Community and Mutual Aid – how we can learn to articulate our own needs in a “safe” place, where it’s okay to “practise” and sometimes get things wrong, in order to learn. This has been a big part of my own experience – and is at the centre of my work as Peer Development Worker with leedsautismaim.org.uk. I think especially for autistic people, we need to get self-advocacy skills before we can access any other support we need – it’s kind of the first necessary step, and often we miss out on other things that may benefit us because we can’t articulate our needs or make necessary requests.

The final part of the session was a discussion around the question: What are opportunities and challenges for autistic mutual aid and community care?

This was my response, which some other participants endorsed (thought and typed at speed!):

I come across a belief among some in our communities who believe that we (autistics) cannot form community care/mutual aid, as our “traits” mean that we necessarily lack the organisational skills etc to sustain ourselves. Our doubts in ourselves and each other can hold us back. We need to liberate our headspaces first. I think often we need to think more radically in terms of structural disruption as part of our activism – dreaming big and working small – or something like that…

Today in general has refreshed my thinking and my autistic politics – including some of the themes I worked through on my Questioning Aspie website (particularly this blog – and maybe a little of this one also). It’s great to see how we, as a community, are developing our politics, and working through our issues collectively. It isn’t all plain sailing, but it is exhilarating and hopeful. A lot of the challenges Autscape is experiencing this time around have been to do with the use of technology – what works where, and how to keep everyone supported (including where to locate the support when often the problem is that a person can’t access the platform where the User Guide is located). I have found myself feeling guilty during the day, because the use of technology is actually offering me significant benefits, and making the environment considerably more accessible to me. I enjoy technology-mediated interaction, and I love the fun of messing around and learning a new platform. But I find that I feel guilty about this, when I see presenters and other participants losing their calm and struggling with limitations they are experiencing. It might be tempting to think that I should just enjoy this opportunity to enjoy being in my “comfort zone” for once – but I think that when you know what it’s like to be left out, or to have to run in order to keep up with a world that is just walking, you can’t help but empathise when you see others floundering, I guess that is exactly the empathy that we need to keep at the heart of our work. And keep working to build a world that doesn’t leave anyone behind.

Wednesday 29th July 2020

I’ve had a chilled out, low profile sort of day at Autscape today. This was largely because I had the pleasure of being a guest interviewee as part of the Scottish Autism Facebook Live series that has been happening throughout Lockdown. Charlene Tait (deputy CEO of Scottish Autism) and her team have been doing a fabulous job of keeping autistic and autism communities going with regular online events over the last few months, and I was honoured to be invited to participate.

I spoke about Autism and Advocacy (and autistic advocacy) in an interview that became in places something of a retrospective of my career over the last 15 years or so. I think it happened that way because one way or another, advocacy is at the centre of pretty much everything I do as part of the autistic community. I see it as being central to my view of how we move forward towards autistic liberation – individually and collectively, and I feel that it is particularly important for us as autistic people because getting our point across, being heard, and being understood are such a fundamental element of autistic struggle. My own experience suggests that we (autistic people) can miss out on support that is available (for our autism, and for other things) because support tends to be structured according to neurotypical priorities, expectations, and ways of being and doing. So if we can’t phone the helpline, or remember the appointment, or get our point across face to face with a stranger in a ten minute appointment, we lose out. So (self) advocacy is a kind of pre-cursor for other interventions. I recently spent a year working as project evaluator for the Leeds LGBTQ+ Health Inclusion project (more info here), that looked in part at ways of tackling health inequalities for autistic members of LGBTQ+ communities through self-advocacy and peer support. As part of this, we did surveys of people participating in the project to see what barriers they faced when trying to access health services, and a key factor (one of the main factors) was that people experienced their autism not being understood and accommodated by health professionals. This touched a nerve, as part of my commitment to advocacy grew from traumatic experiences with health professionals (I wrote about them here, and here ) and I really would have hoped things had improved by now. In some ways they really have, and we need to keep counting the victories – but progress feels painfully slow and indirect sometimes.

I guess something I would have liked to have expanded on in the interview today is my feeling that we really need to be analysing (and challenging) the clinical gatekeeping of our communities and our access to support. A week such as this – with Autscape and other interviews and discussions, reminds me of how capable we are at community care and mutual aid, and of the philosophical approaches and strategies we have at our disposal. And yet in order to access more “official” (funded) support that is necessary for so many of us to have our basic needs met and our fundamental rights upheld, we are at the mercy of clinicians for validation and the rubber-stamping of our identity. No one’s needs ever changed by being handed a piece of paper with them listed in clinical language. All that happens instead is that opaque diagnostic pathways, overloaded services, and biased diagnostic criteria act as barriers to support that would better be allocated on basis of need rather than diagnostic label. And the medical-industrial complex colludes with a capitalist political system that treats us as at best an inconvenience, and at worst a burden – a net drain on resources, and would far rather we went away.

You can watch my interview back here.

So, after that I needed some time to relax. I was fortunate therefore, that Autscape had scheduled a piano recital by Madge Woollard (@funkiepiano) for this afternoon. I listened lying on my bed, with my weighted blanket covering me, and was in heaven for a while. Madge’s classical repertoire clearly overlaps a lot with my personal preferences (lots of romantic and post-romantic/impressionist – Chopin, Rachmaninov, Grieg, Debussy). And I loved her playing style – really intuitively musical, and clearly “in the moment”. I could be reading too much into what I saw and heard, but I really felt like I connected with her musicality, and felt a bit of the passion and total absorption that I used to feel when I played piano, and that I still feel when I play my other instruments (though never, with the possible exception of my hammer dulcimer, to the same extent as with my piano) – all instruments “speak to you” when you play them, but there’s something about the left-right coordination of a piano, and the fact that it uses both hands and both feet that just really takes your mind somewhere else – well, that’s how I’d describe it anyway.

The explicit link between autism and piano really took me back to my teenage years too – a couple of years before I figured out I was autistic. I was succeeding well at school, but completely failing socially. Unstructured times – breaks and lunch times (dinner times – I’m from Yorkshire) were painful, and I got around this by getting permission to play school pianos while other students were supposed to be outside. For preference, I would play the old grand in the school hall (because it was the most tactile). This was right in the centre of the school, and was the main thoroughfare between the dining room and the other side of the school (including the staff room), so people would often come past and stop to listen. Then if I stopped and they talked to me, they’d talk about what I was playing, and I knew how to handle the interaction, because I knew what I should say. I also found that people recognised me as “the girl who plays the piano” rather than as “the girl with the arms” (referring to the rigid splints I used to wear on both arms) – while I may have (and had then) a political analysis of the need for abled people to diminish people’s impairments in their mental picture of disabled people, it was nice to be recognised for something I was good at, and that I cared about. There’s also an interesting point in the fact that if there is one instrument my rickety, deformed, dwarf arms were not designed to play, it is the piano. But – as with everything I do – I had got obsessed with it as a child (it was Beethoven’s Emperor Concerto – the 5th Piano Concerto that did it!), and my mum worked hard to get me a good teacher, so that was that. I got all my grades (1-8), and although there was a natural “ceiling” on my progress (my arms lack the stamina for much of the concert repertoire, and my hand span is compromised by clinodactyly) I am glad I had the opportunity – my view is that piano (or any keyboard instrument) and voice studies are the best fundamental training in musicianship, and I have so many options now to pick and choose (pun definitely intended!) whatever other instruments work for me – both in terms of physical abilities, and of inclination.

It was also lovely to hear Madge mention being obsessed with particular pieces. She also played one of my obsessions – Chopin’s Raindrop Prelude. I had heard this in a music lesson, and just thought it was the most compelling thing ever (perhaps apart from the Emperor Concerto) – it’s the G# min chords with the octaves in the second part of the ‘B’ section that just go right through me in the most delicious way – playing and hearing. So, I sneaked out a copy of the score and took it to my piano teacher, asking if I could learn it – I was between grades at the time. He rolled his eyes and said I could if I wanted, but it was probably too hard at this point (I think he was used to me – I went from being brilliant to terrible from one week to the next, depending on how much of my attention the repertoire had at that time, and how many other things in my life were interesting me). Anyway, I went back the next week having memorised about two thirds of it – never under-estimate the compelling power of an autistic obsession!

I am so grateful to Madge for the beautiful music, the quiet moment in a chaotic week, and the reconnecting with something so personally and autistically important to me – thanks, Madge!

This evening, a few of us who are “autistic spoonies” (autistic people who also experience chronic illness and chronic pain) got together for an informal discussion. I’m not going to write about the discussion, because it wouldn’t be right to bring things out of the “room” (so to speak). But I will say that once again, the feeling of community, and of being *seen* (and heard) was so invigorating and empowering. The thing about having multiple impairments of different “types” (physical, mental, neurodevelopmental) is that often you end up having to prioritise one at a time, depending on which is relevant to the group or the topic – so I often find myself having to remind myself that I’m “doing being autistic” now, or “doing being a wheelchair-user” now, or whatever. But the feeling of just being with other people who “get it” (and don’t think it’s remotely weird when you say you don’t *know* if you’re in pain, or you don’t to take your meds, even though you know they exist and what they’re for, or that people don’t believe you experience pain because you don’t “do” it right). I know there are overlaps in some of these issues with other impairment groups, but the degree of “fit” this evening was just so refreshing. Quite a few of us felt that we’d value a more regular online chat outside of Autscape, so I volunteered to collect together names and details (n.b. I am not volunteering to organise anything at this point, but I am collecting people’s details and putting us all in touch with each other to decide how we go forward). If you are an autistic spoonie and think this might interest you – please email me at loomesgillian@gmail.com (please do this rather than using Twitter or anything else, so I have everyone in the same place).

Phew! Tired now! Last day of Autscape tomorrow – and it’s another busy one, exploring different facets of “How NTs see us”…

Thursday 30th July 2020

Well, here it is: the last day of Autscape 2020. I am typing away here while reflecting on the day, and the week, and just how remarkable it has been to have autistic community in my flat. I think it’s been even more of a special experience because it’s happened alongside my everyday life, which has meant that I’ve been able to interpret my day to day work and social life through the “lens” of autistic politics and togetherness. Somehow, that’s felt more impactful than going away somewhere and experiencing autistic community outside of my everyday life. It’s going to be hard to go back to “normal life”, but hopefully we can carry forward some of the momentum (after we’ve had some sleep!) I’ve already had several people get in touch about the Autistic Spoonie chat, so that will go places, when we decide exactly where we want it to go.

So, I began this morning with The Neurotypical Gaze by John-James Laidlow. John-James is a video essayist and filmmaker and he presented an annotated video about autistic representation in the mainstream (neurotypical) world of media. This was another busy session with around 130 participants, and lots of active chat (in text form). Unfortunately, the style of presentation – while clearly professionally and passionately done – was not hugely accessible to me. I found some of the graphics, and the pace of the audio to be quite unsettling, and was really worried about landing myself with a headache at the start of a busy day.

That said, looking back at my notes from the session, I clearly got a lot from it, and am left with a bunch of references and links I look forward to following up. Its key starting point was Laura Mulvey’s 1975 work on the “Male Gaze“, although John-James was quick to explain that Mulvey’s work has received criticism for its middle class, masculine, cishet focus – and he sigposted to bell hook’s “The Oppositional Gaze” and Judith Halberstam’s “The Transgender Look” as examples of work that has taken the original concept of “Male Gaze” in directions that relate it to the experiences of other social groups. This framing just led me to reflect briefly on whether, instead of talking about a pioneering concept or body of work as being “criticised” for incompleteness, we might talk about such ideas and theories being augmented by subsequent work. Framing such a process as “criticism” just seems somehow reductive, and unnecessarily dismissive to me. I see the sum of human knowledge as being a community endeavour. So, in my own work – for example, I choose not to criticise groundbreaking earlier feminists for not having included an analysis of autism in their work. Rather, I see myself as building on their work to produce something new – which I label “autistic feminism”.

John-James then went on to reference examples of ways in which the idea manifests in representations of autism – i.e. the ways in which autism and autistic people are represented in ways that conform to NT expectations/stereotypes, and that are palatable to NTs. These included references to the shooting of Charles Kinsey, and to autistic savants – with the suggestion that autistics are expected to be extra-brilliant in order to be seen to contribute sufficient to capitalist-ableist society to be considered worthwhile. He also commented on the trend in much entertainment media of writing characters who are “coded autistic” (such as Sheldon in The Big Bang Theory), which provides the opportunity for the NT audience to laugh at “autism” (which is actually a representation of NT stereotypes of autism), while also providing the “get-out clause” of deniability if the representation is challenged, as it isn’t actually named as “autism”.

He concluded by referring to examples of autistic self-advocacy that purport to reveal “What Autism is Really Like” or “The Reality of Being Autistic”. He pointed out the “trap” that such forms of representation can face, as they position themselves in opposition to NT expectations – as he put it, autistic self-advocacy “must not let NTs dictate what is the correct way of being autistic”.

The final session I attended at Autscape 2020 was the Ask an NT panel. This was a “first” for Autscape (although it replicates similar events that are now well established at Autreat – America’s Autscape). The aim of the panel was partly to find out a bit about life from an NT perspective, but mostly it was to satirise similar events featuring “token autistics” (of which I have much personal experience). The satirical dimension of the event was established from the start – with the 4 panellists being introduced with the qualification that “like any good token, they are only experts in their own experience” – how many times is that argument used to silence autistic advocates?

The panel was asked a lot of really fascinating questions – fascinating mostly as they revealed just how taken-for-granted – how unexamined – NT-ness is, and how much of an easy ride they get in not having to explain themselves, and to account for their views, perspectives, and needs. The world just seems to provide so much social confirmation of their views and actions that they don’t seem to give them more than a passing thought. The questions I managed to write down in my notes were as follows – note that the wording was what I could write down at the time. It may not be a verbatim record of what was asked:

  • How do you know that you’re NT?
  • What do you think about when you’re not obsessing about things, like a normal (autistic) person?
  • How do you work out what to say in conversation? Do you rehearse? Or do you use telepathy?
  • How do you know what to be open about and what to keep secret?
  • Why are you taking part in this panel?
  • Do you feel autistic space is accessible for you? Is there anything we can do to support/welcome you?
  • Does your lack of special interests cause you any suffering?
  • Why do you always stare in each other’s eyes? And how does it feel not to stim?
  • Why do you always ask people how they are doing but get surprised by a sincere answer? Is it cultural? Or do you lack the Theory of Mind to recognise that everything may not be “fine” in actuality?

There were also lots of questions written in the Chat that didn’t get answered due to lack of time. These included “do you wish you were autistic?” and “is it difficult being NT in an autistic family?” My question (which, again, didn’t get answered – I would like to know how any NTs reading this would answer it):

Do you think there are too many people labelled NT these days? Is there a risk that it is becoming a kind of “fashion label” at the expense of real NTs?

I have some observations about the session: My first observation was quite how difficult it seemed for the panellists to answer some of these questions. Things like why they do things as they do (bearing in mind, that of course, like in any interview, we are actually hearing what the interviewees want to think/say they do – intellectualised, decontextualised, glossed…) While there were patterns in some of their answers, these were not fixed enough to constitute rules. And this brought to mind the obsession that NTs have had for decades about “social skills training” for autistics – my feeling is that if you want to train us, you really need to get your sh*t together among yourselves first (yes, that is flippant autistic snark).

The panel’s answers also revealed a lot about what they understand about autistics – seeing my own identity and community centred as the point of reference in a discussion about neurotypicality was a fascinating experience! It became clear that in some ways, we’re a bit of a mystery to them too – e.g. when discussing NT “interests” they often suggested that they like having “lots” of interests – as though that were a defining difference between autistic and NT attention and interests. But this is not the case – autistic people can have LOTS of interests (I do!). I’d suggest the difference lays not in the quantity of interests, but in their intensity and all-consuming nature. Similarly, the NTs seemed to suggest that they would find it difficult to define “autistic space”, or to know when they were in such a space. Autistics often know this immediately. While some of us (including a small proportion of my autistic acquaintances) reject such spaces, their rejection still serves as a form of identification of the space. But a good many of us recognise them because we feel “at home” in them – we may have the struggles of any community (fall-outs, disagreements, different views on ways of being and doing), but in autistic spaces, we are free to have such social disagreements without our autisticness being centred as the reason for the “trouble”. Interestingly, when the NTs did allude to “autistic space” the most common word they used to function as a synonym was “quiet”. This told me “they think we’re quiet”. But again, this is not necessarily the case. We can be loud, bright, vibrant – extrovert. The full range – just like NTs, and autistic individuals can vary in their sensory needs and presentations – just like NTs. Again, the difference is more subtle (I’d suggest it lays somewhere in the fact that for us there is a more definite imperative that our “space” works for us. NTs may tolerate uncomfortable “spaces” (either physical, sensory, or social discomfort), but for us, we are often pushed to our limits in the NT world anyway, so we have less “bandwidth” to deal with additional discomforts). This experience made me reflect on the future of “Autism Research” – and think, in short, that maybe if we’re going to move forward in understanding autism, we need to turn the lens more comprehensively, and work on what we know about NTs: how we define neurotypicality, how it manifests, and what exactly is changed when we’re talking about non-neurotypicality instead. It strikes me that we need to understand both sides of the coin, because they are two sides of the whole. As a social researcher, I know that there is a whole raft of knowledge on “social” and “communication”. But across such bodies of knowledge there is the unstated, unrecognised, unexamined, unchallenged assumption that such “social” is neurotypical social – by definition. Experiencing this panel – with the neurodevelopmental minority interrogating the neurodevelopmental majority – suggested to me that this form of knowledge production is more than the sum of its parts: we learned what NTs have to say about (their) neurotypicality, but we also heard what they said about autism, and how these different dispositions interact in the panellists’ conceptualisations of the social world, and how they navigate this world world – as NTs (even though it seemed many of them weren’t able to say for certain that they were NT – never having questioned the assumption, and certainly not having any formal diagnostic evidence of their NT-ness). I wonder if the concept I’m searching for is “intersubjectivity”? Maybe I want an inter-subjective approach to autism (and neurotypicality)? In short – I think I want more mutual learning!

And this leads me to think that perhaps there is an additional political strategy for us here – “us” being politically active autistics who concern ourselves with critiquing and challenging “mainstream” “basic science” (Pellicano et al. 2014) autism-related research. We tend to be very vocal about some of the research that particularly offends us – that we find harmful, disrespectful, degrading, dehumanizing…and we voice our concerns in typically political terms – evoking discourses of equality and rights. And, of course, these discourses are fundamentally important in their own right. But maybe there’s a better “language” for us to raise our concerns – i.e .one that might appeal to the researchers whose minds and approaches we wish to change. Maybe there’s an argument to be had that the kind of “mutual” (what I’m calling, perhaps erroneously, “inter-subjective”) approach to the study of autism – and neurotypicality, as 2 sides of the same coin, is preferable in terms of the knowledge it produces. So, not just because it’s “fairer”, or more just, but because it’s better research. Maybe appealing to discourses valued by researchers may have more of a direct impact than we can have by trying to bring them around to our political perspective. And maybe this argument actually represents exactly the kind of “intersubjectivity” for which I’m arguing?

Another observation was how much NT privilege came through in the session – not necessarily specifically from/by the panellists themselves, but in what they revealed of the world in their answers. Perhaps one of the clearest examples of this came in the panellists’ answers to the question “Why are you taking part in this panel?” Each of the panellists reported that they had agreed to participate as “it sounded interesting” – with one saying they’d never considered if they were NT, having rather assumed it. One also indicated that she was interested in the idea of a “Safe Space” where “blunt” questions could be asked and answered.

What interested me was that no one mentioned their “community” – or the need to speak up for themselves, and others like them: to challenge discrimination, injustice, oppression. It was something that would be an “interesting” way to spend an afternoon. This almost intellectualised curiosity is a world away from the activist commitment, and sense of collective responsibility that I, and many of my colleagues, experience when we agree to be “token autistics” or “ventriloquist zoo exhibits”.

I was also quite surprised to hear that panellists were “nervous”, and to see their participation in the panel described as “brave”. I understand that any kind of public speaking engagement can be somewhat nerve-wracking, in the sense of being put on the spot. But – beyond that? I mean, the panellists had signed up to participate (so, in this sense, it was quite different than the kind of awkward, sometimes hostile experiences autistic people have when NTs learn that we are autistic – similar to those I wrote about here), and what was at stake for them? I mean, they might be the subject of banter within the context of the panel – but again, this is a kind of symbolic experience to which they have consented. It is a turning of the tables for which they have given their permission – because they have the power to do so. None of us who is autistic has the opportunity to withhold our consent, or withdraw our permission to being laughed at, bullied, battered, abused, incarcerated, or any of the other barbaric things that happen to autistic people because they are autistic. They are never going to experience the fear of what will happen when they disclose to a prospective employer that they are NT, or a potential lover, or when their school bully finds out, or their medical insurer. They’re not going to be refused the right to emigrate for the job of their dreams because they are viewed as too much of a risk for the country’s health service…

So, I enjoyed the panel. It was eye-opening. I’m glad that the NTs put themselves “out there”, and took the banter in good part. But I hope they, and all of us who were part of the panel, keep in mind the NT privilege it revealed, and recommit ourselves to the work of dismantling this privilege.

And so ended my participation in the formal programme of Autscape. Our server on Discord (that has hosted the social dimension of Autscape 2020) remains open until Sunday, as we all find our way back down to earth. I hope we avoid a painful crash-landing, but I think it’s going to be tough. Losing this particular intense, heady manifestation of our accepting, safe, quirky, diverse, passionate, fiercely-activist-focused, 24/7-restless-for-change community is going to be a big loss. But there’s always more to do, and more spaces, and more projects, and more walls to break down – certainly enough to keep us all busy until next year anyway…

If you’re interested in finding out more about the autistic rights movement, and neurodivergent activism, I really recommend you check out this edited collection (edited by Steven Kapp) – “Autistic Community and the Neurodiversity Movement: Stories from the Frontline“. It includes a chapter about Autscape – by Kalen Leneh Buckle (event manager for Autscape), and if you click here you can download the entire book as a pdf document totally free of charge.

See you for Autscape 2021.

Practising Reflective Activism: I messed up, I’ll be better in future…

We all mess up sometimes. Having political consciences, and doing activism, do not make us immune to such failures. But they do give us a responsibility to hold ourselves to account when we make mistakes, and to commit to doing better in future. Yesterday, I made such a mistake. I have decided to write about it here, to encourage others to learn from my mistake, and to commit publicly to doing better in future, and to working to tackle the structural oppression and inequalities that form the context of my mess-up.

My Day Yesterday

Yesterday, I went into my local town for shopping and to meet my mum for coffee. It’s only the second time I’ve been out like that in the last 5 months, and the first time I’ve been out at a weekend, so it was a little confusing and disorientating. There are some things that are now harder about navigating the space as a wheelchair-user than they were before the Pandemic: for example, most of the shops now have queuing spaces marked out on the pavement in from of them. This makes a lot of sense for maintaining physical distancing, but my town is built on a hill, and has lots of slanting pavements and cobbles. I know the pavements intimately, and am expert in navigating them precisely so that my wheels go exactly where they need to. But now, there are often people congregating where I need to be, and I have to be ready to explain to them that I need the exact bit of pavement they’re occupying because the bit just next to them is inaccessible. I think accessibility is more complex than many abled people believe, and until you’ve actually used a wheelchair out in the “real world”, there are lots of things you just don’t consider. As I’m autistic, I find that the words I need for spontaneous social interactions are often hard to find too – so I’m having to memorise appropriate “scripts” for finding my way around this new landscape.

But some things are now much easier as a result of the Pandemic. Many shops have changed their layout to enable physical distancing – removing lots of displays, and creating one-way systems in their premises. This makes such places much more accessible for me – given my wheels, and my “challenged” (read: virtually non-existent) sense of direction. Indeed, I may (or may not) have spent extra time in such shops yesterday, purely for the purpose of doing laps – the sense of freedom and sensory joy, after months spent in my tiny flat, was just wonderful.

I had also forgotten quite how exhausting “outside” can be, and if I’m honest, I think I overdid it a bit. It was at the end of this tiring afternoon that the event alluded to in the title of this blog took place – what follows is a “confessional” reflective account, and a public commitment to try my best to do better (and to be better) next time…

My Mistake

I had finished my shopping, and was ready to get back in my car and head for home. As I say – I was tired. I was about to go pay for my parking when I figured I needed to use the bathroom and couldn’t wait to get home (a 5-minute drive, but augmented at each end with around 10 minutes of hoisting my chair in and out of my car). Like many disabled people, I don’t generally get a lot of warning when I need to use the bathroom, so I headed into Marks and Spencers (other chain-stores are available – though in my hometown, M & S is the only one with an accessible bathroom – “This is not just any bathroom…” etc etc). When I got to the bathroom area, I found that the accessible bathroom was occupied. For context – I should explain that there is also a “Ladies'” and a “Men’s” bathroom, as well as a totally separate room for changing babies (though there is no Changing Places facility). I then began the familiar experience of waiting…and waiting…and waiting, while listening to the voice of a female adult and a female child inside the accessible bathroom. People came and went from the other bathrooms, and I sat and waited. As I said, I don’t get a lot of warning when I need to use the bathroom, and I was getting anxious (as well as feeling the usual frustration and humiliation at the structural reminder of my “difference”, my “otherness”, and my social inferiority). As I waited, I reminded myself that I should not be judgemental. There was probably a completely legitimate reason why the people occupying the accessible bathroom were taking (what felt to me like) an inordinately long time. I generally take longer than most abled people when I use the bathroom myself, and I should be the last person to police other people. And I reaffirmed to myself that not all impairments are visible, and no one has appointed me Bathroom-Judge. But I was getting more and more anxious, as well as distinctly fed up that this was realistically the single only bathroom available to me as a wheelchair user in the town (there are actually 4 other accessible bathrooms in town – but three are in cafes/restaurants where you’re expected to purchase food/drinks before you can use the facilities, and one is in an independent department store at the other side of town, on a very inaccessible street). So I waited, and checked my prejudice…

Then, a woman and girl (around 7 or 8 years old) came out of the accessible bathroom. Usually, when this happens, those coming out of the bathroom make brief eye contact with you as they leave – if it is someone who feels guilty for having used the bathroom when perhaps they didn’t need to (e.g. abled people who “sneak” into an accessible facility because the place in general is quiet, and they don’t expect a disabled person to need it, or a parent with multiple young children), they look apologetic, and sometimes even say “oh, sorry”. Or if it’s another disabled person, there’s a kind of expression of comradeship as we both acknowledge the experience. But in this case, there was nothing. The woman and the girl just ignored me, and continued their conversation as they walked past me.

And this is when it happened, the thing of which I’m quite ashamed…

…I was so fed up at having had to wait, and at having been totally ignored, that I called after them “Couldn’t you just have used the regular bathroom?”. It was a split-second decision, and I was inside the bathroom with the door locked before I fully appreciated that I’d spoken. I don’t think there was any reply, but I don’t know for sure.

It was at the point when I was on my own with the door locked that I realised how in the wrong I had been. I was angry, fed up, anxious, and tired – that is true. There are not enough accessible bathrooms in public places – that is also true. Lots of people use accessible bathrooms for convenience, when they could go to the effort of using regular bathrooms – that is also true. And other social groups apart from disabled people are not adequately catered for when it comes to access to public bathrooms (parents of small children, trans people – as just two examples) – that is certainly true.

These are all political concerns, and should be focuses for activism (indeed, they are – see, for example, the campaign for Changing Places facilities, that has seen recent success). But they should not have influenced my individual behaviour towards the woman and the girl in that moment.

My actions were a “venting” of personal frustration, but they were probably socially and politically harmful. If the woman and girl were using the accessible bathroom illegitimately (for convenience or added privacy, or to jump a queue, maybe) then my calling after them in a challenging and confrontational way is unlikely to have made a positive difference to their future behaviour. It probably just confirmed prejudices about disabled people. Indeed it’s possible that if I had just sat and waited for them to leave without saying anything, they might have reassessed their own behaviour, and felt guilty themselves – and I’d have made a greater political intervention by staying quiet. But – far worse than that in my view – they may have had an entirely legitimate reason for needing to use the accessible bathroom. And my behaviour may have simply added a long list of times when they have not been believed, or have encountered hostile responses for using accessible facilities. I may have contributed to existing fears they have about accessing public places.

My Commitment

I have no way of knowing what their reasons were for using the accessible bathroom (that is exactly the point – I had no way of knowing), or what impact my words had on them (I was all ready to apologise when I came out of the bathroom if I had seen them – but I didn’t). But I do know what kind of person I want to be – I want to be a person who contributes to making the world a better, safer, kinder, more accessible place. Yesterday afternoon, I briefly failed to be that person.

Next time. I will be better…

“Crip Time” – and the Theft of Disabled Pleasure

“Crip Time” (Samuels, 2017) describes how time can operate as a site of loss and of alienation, but also of liberation for disabled people. The concept resonates extremely strongly with me – as the combination of my physical impairments along with my seesawing tendencies towards inattentiveness and hyper-focus mean that I have always struggled to conform to normative social constructions of time – particularly regarding the notion of “work-life balance”. Here, I want to outline what I experience as one of the cruellest implications of my disabled relationship with time – the loss (theft) of “free time” – and of joy and pleasure.

My first memories of experiencing the inequality of “free time” was in junior school. It was common for my teachers to arrange the day so that we would be expected to do “work” (English, Maths etc) in the morning, and “fun” things (creative work, topic-based projects etc) in the afternoon. This sounds great, except for the fact that you had to finish your “work” before you were allowed to move onto the “fun” stuff – even if this meant you were sitting there “working” most of the afternoon, while others around you had “fun”. The feeling of being punished for working too slowly was exacerbated by the fact that being made to “work” during “fun” time was often required as an explicit punishment for others who had deliberately misbehaved earlier in the day. This set a pattern for my life that persists to this day – in the sense that I actually perceive many tasks associated with “work” to be “fun” (particularly anything involving writing), and find social divisions between “work” and “life” (and the requirement to “balance” these) to be rather arbitrary. But also in the sense that I expect to take longer than others to fulfil the required amount of “work” before I can move on to “fun” – and feel crushing guilt as and when I try to relax.

Another theft of time I have experienced due to my disabilities seems on the surface to be benign – even compassionate in its motivation, but it can be crushing in its impact on your self-esteem. When I got to grammar school, and was approaching GCSEs, it became clear that with the support and equipment to which I had access at the time, the time it took me to complete the workload required for all my courses, along with the toll this took on my body meant that it was unsustainable (to illustrate – I was allowed unlimited extra time by the exam boards for my GCSEs – my final exam, by which point I was quite beyond exhaustion, took me 7.5 hours). One solution offered was that I should reduce the number of courses I took (and therefore, obviously, the number of qualifications open to me) in order to give me more time to work on “important” subjects. I really didn’t want to have to do this, because it would have meant I got fewer qualifications than my peers (in the extremely competitive, pressurised school environment that was my “world” at that point), and also that I would have to drop subjects at which I excelled – and that brought me huge amounts of pleasure and respite from the painful and exhausting experience that epitomised the rest of my school life, in order to spend more time on things that confused and hurt me – simply because those things were deemed “important” by others. Fortunately, we managed to reject that suggested option for my education, but this meant that I had stuff to prove, and I developed the feeling that I couldn’t allow myself to be seen to struggle too much, as this would lead to me losing out on things I enjoyed, and that meant a lot to me.

Interestingly, extra time to do “work” was also perceived by my peers as an “advantage”. I was constantly verbally abused throughout my time at school, because other students believed I had an unfair advantage as I got to spend longer on exams. They had clearly never spent 7.5 hours deliberately doing something that caused themselves intense physical pain. Doing so is perverse, but it’s a constant feature of my daily life.

Related to this was a battle we had to fight for me to be able to do one of the A-Level courses I wanted (and at which I had excelled for GCSE) because the teacher was concerned I wouldn’t cope with the physical demands of the course (i.e. the amount of writing required). I remember being devastated when I heard that this had been suggested – not least as the teacher who suggested it (my French teacher) had always talked and written about what a “gifted” and “promising” linguist I was, and how I was a “joy to teach” (well, it was my “joy” to learn too). I will always be grateful to my beloved German teacher for fighting my corner, and saying there was no way that I should be denied the opportunity to take French. I did French, German, English (Language) and Music A-Levels, and they were some of the happiest days of my academic life. It frightens me how easily I might have missed out on those experiences.

And then, as an adult, I entered the “world of work”, with the expectation that I should manage my own “work-life balance” around the (to me, completely arbitrary) notion of a 37.5 hour working week. And I ran into problems – because everything in my experience of “work” (loosely defined) to this point had confirmed for me that work takes me longer than other people – and that it is expected to make me hurt almost beyond endurance, and exhausted to the point of spontaneously falling asleep in public. So if my peers spent 2 hours on an exam that took me 7.5, and a working week for those same peers is 37.5 hours – well, you do the Maths. And then people are surprised when I can’t “switch off” – when the guilt induced by “leisure” time makes it not worth attempting, and why I feel like a constant failure.

And because my sense of what is “difficult” and what is “easy” and what constitutes “work” and what constitutes “pleasure” are so at odds with much of the rest of society, I can end up losing out when people try to be helpful too. It could be that my (paid) work requires me to make phone calls, or write emails, or do any of the other tasks that my autistic brain finds bewildering, exhausting, and painful – and this could be on a day when my unruly body is already burning and stinging and swimming in treacle. A “normal” person would be curled up in bed being looked after. But it isn’t so easy to play the “sick role” when this is your default setting. Society runs out of patience very quickly. The thing that might help me could be writing an essay, or working with my research data – my ability to hyper-focus on a topic I find interesting and engaging is a particularly useful analgesic. It would actually be helpful to my “recovery” to do a task that others would regard as “work” – and it’s good for my “self-esteem” too. But if I try to ask for help with the specific things I can’t do (the phone calls etc) then I know from experience that people with power over me will try to “help” by removing the “burden” of the things I enjoy and do well – so I have to struggle through the impossible things, in order to be allowed to do the good things. And I also know I run the risk of being found guilty of not playing the “sick role” properly – like the person with clinical depression who would benefit from going to the pub with friends, but would also face disciplinary action at work if they were seen out of their house while “off sick”. Being sick gives others the right to control how you spend your time – and being disabled makes this a default setting. And it all just emphasises to me that I “don’t fit” – that I’m faulty.

The liberatory struggle at the centre of our disability politics needs to encompass a fight for our freedom to experience joy, and pleasure, and rest – to dream, and to hope, because these experiences are part of what it means to live a fully human life. If all we gain from our struggles is the right for individuals with impairments of body and mind to spend their life in a constant loop of work, illness, and exhaustion – running to keep up with a pace at which others walk,, then we really aren’t aiming high enough.

A Day in the Life of a Spoonie-Crip: Notes from the Tightrope

Today is a challenging day. It’s not particularly unusual, but it is difficult – more difficult than some days. There are lots of things that I am failing to do. However, one thing I can (just about) manage is to speak my thoughts and experiences and record them here. I have two reasons for doing this:

  • I am in my flat with no one except my cat for company. I feel desperately alone and sharing things here on my blog is one way of feeling “heard”. When I am this weak and incapable, feelings of being “abandoned” and “vulnerable” are particularly acute. The wheels of Disability Bureaucracy grind exceedingly slowly, and the time spent waiting to find out if you will be provided with support you have been assessed as needing can be particularly distressing.
  • Much experience of disability is absent from collective social consciousness and social imagination. There are disabled people who are unable to narrate their experiences, or to whom a way of doing so that is accessible to those around them remains elusive. Also, the very process of narrating our disabled life experiences involves navigating a tightrope of social norms and preferences, as by definition many of these experiences transgress that which is considered socially “acceptable”. This means that taking up our place in social discourse means necessarily setting ourselves outside of the bounds of social legitimacy – revealing ourselves as the possessors of bodies and minds that are outside of our full control: that disobey our instructions, that wobble, that shake, that leak, that bleed – that fall short. But being “hidden” is unacceptable to me. I have a voice, and I want to use it. I want to take up social space, and I want my needs, desires, and concerns to contribute to social consciousness. Recording my thoughts and experiences here is part of my trying to figure out how I negotiate the personal tightrope, and contradiction that arises from this dilemma.

So here is what my day looks like:

The Physical

I am exhausted today. I need to clarify that – many people, indeed most people will have experienced “exhaustion” so will think they know what I mean, but I want to be clear. I want to do my best to make sure we are on the same page. I am pretty much always “tired”. I wake up feeling worn out, and my daily life feels like a constant battle against falling asleep. Whatever I appear to be doing, I will also be engaged in this battle below the surface. My attention will be divided between whatever you see me doing, and the efforts of keeping awake, silencing pain, and keeping control of my body. That endeavour in itself is tiring. But that is my “normal”. So when I say that I am “exhausted” I mean that I am experiencing something that goes beyond that “normal”.

If you have ever been so completely physically fatigued that you cry uncontrollably, that speaking makes you feel sick, and that you can’t control your body enough to sit up, or to raise your arms, or support your head, that is the kind of “exhausted” I mean. And as ever, the phenomenon doesn’t just affect that which is visible from the outside. This kind of exhaustion also affects your internal organs – particularly your digestive system. The consequences of this physical malfunction are on the “wrong” side of my own personal “tightrope” of things I can and cannot bring myself to discuss publicly. But managing these experiences, particularly with the level of fatigue that causes them, is in itself exhausting. And my inability to bring myself to describe them in graphic detail causes me problems when this is expected of me to try to access help with them. My advocate, my occupational therapist, and my physio are all examples of people with whom I have struggled to navigate that tightrope. Disabled existence is often a balancing act between protecting my dignity and accessing appropriate support.

I am uncomfortable. I am sufficiently medicated to manage my current pain – in fact, today pain is less of an issue than fatigue. However, I can’t sit myself up comfortably in my chair and part of my back rest is digging into me. Again, not the end of the world, just another thing to deal with. I have spasms in my breathing, which means that I do sharp intakes of breath, or sigh involuntarily. It strains my muscles, I am also freezing cold, as a malfunctioning nervous system means I can’t regulate my body temperature effectively. I have an electric heat blanket on my bed, under which I think I will go and hide when I have finished writing this. I am also hungry (I haven’t managed to eat anything today), and I really want to be able to get washed – but I can’t take care of these needs safely and independently on a day like this.

The Emotional

I feel useless, and I feel like a failure. I should be working – but although I am able to speak these words to my computer in order to record this blog, I currently lack the physical and mental energy and strength to do the things I need to do for work. I need to be able to use a mouse, and to pick up and manipulate bundles of documents in order to do that which I should be doing today. Also, I learned the lesson a long time ago, that if I keep trying to work through days like this, my body just throws worse at me. It keeps shouting at me until I have no choice but to listen to it. I am very lucky, in that I mostly have sufficient autonomy in my work that moving things around and working a “non-conventional” schedule are options. This means that my sickness record does not get too out of control (always a concern when looking, or needing to change jobs), but it does rather mean that my life is basically taken up by working or recovering from work. I do love my work – but there are other things I love to do as well.

I also feel a bit like a fraud. The nature of my impairments means that there are not so many things that I absolutely cannot do. Rather, it is more the case that where a typical day for a typical person may be equated with a “gentle stroll” or a “brisk walk” for me it equates to running a marathon. Similarly, I can do things like “walking” (with two elbow-crutches, slowly, and with a determined grimace on my face) and in my brain that becomes the same as regular walking, so I tell myself that I don’t really need my wheelchair and could walk like regular people if I tried. Then I remember the times when I did used to try to walk like regular people, and I realise I can’t, and I get upset and frustrated with myself.

I feel very sad. Last night I dreamed I was walking in the hills by my old house. I used to do this every day during the first couple of years of my PhD. Growing up, and living in the South Pennines, I have always been hugely blessed to have beautiful green places right outside my front door. Given that most of my work involves sitting at my desk in front of my laptop, thinking, and writing, getting outside and “clearing my head” used to be an integral part of my daily routine. I used to walk three or 4 miles most days. My other passions were competitive distance running, swimming (and generally being in water), and dancing. Sometimes, I dream I am doing these things, or I see other people doing them, and for a split-second I forget that I can’t do them anymore. In these instances, it feels like life is a continuous process of hitting brick walls. It’s painful.

Mostly, I feel overwhelmed. The basics of life require so much more of me than I can manage on days like this (indeed, on any day – today it is just more noticeable). Everything, not least the constant onslaught of bureaucracy that goes with being disabled, feels that much more impossible when you have no fuel in the tank. I’m getting better at putting things aside for a “better day” but the trouble is that they are still there waiting to spoil the “better days”. At least then though, I generally have more reserves to deal with them.

I need to stop now, as I’m too tired to keep talking. Thanks for reading.

#AutisticPhDiary 3 – Advance Decisions Study Update, and the Open Justice Court of Protection Project


Observant readers will have noticed that I missed posting my weekly PhD update last Sunday night. This is because I was busy working on an exciting new project that launched last Monday – more of which below. Firstly though, let me fill you in on what I’ve been doing with my PhD.

PhD Update – Why making an Advance Decision is a holistic process

I have been working on my PhD study looking at the views of disabled activists on the subject of advance decision-making: Advance Decisions to Refuse Treatment (ADRT) and Lasting Power of Attorney (LPA). A question I’ve been exploring in my data is why, when so many of the participants seemed to be supportive of the right to refuse treatment, and of Advance Decisions in principle, only one of the 15 people I interviewed had made one for themselves.

One very good reason why a person would choose not to make an ADRT is if there are no treatments they would wish to refuse in advance. Some people have philosophical or practical reasons for this, so I wanted to see if any such reasons were represented among the activists. I found one participant (“Georgia”) who seemed to fit into this category, so I decided to explore her views further.

In our interview, I had asked Georgia if there were any circumstances in which she could envisage that she would wish to refuse treatment, and she said that she couldn’t – “because until I’m there, I don’t know”. Our conversation indicated that, like many people, Georgia viewed an Advance Decision as something that applies to end-of-life circumstances and life-sustaining treatments. She saw the decision as being concerned with whether a person would want to live a (potentially severely disabled) life post-treatment, with treatment refusal being a way to avoid this, adding that “it might not be as bad as we think it would be”; and referring to “research” that indicates people have a tendency to “think things are going to be…awful” living such a life, but that when “it happens to them” the situation is “not as bad as they thought”. This means that she wouldn’t wish to refuse medical treatment in future and risk “missing out” on a quality of life that is more tolerable than she may have predicted.

This kind of view is very prominent in disability rights activism. We are used to defending ourselves from people who tell us (seemingly as a compliment) that they would rather be dead than live with your impairments; and we have experienced our own “journey” of “getting used to” the onset or progression of our impairments. With this as our frame of reference, it can be anathema to us to consider that we may wish to outline a situation in which we would rather refuse life-sustaining treatment than live with profound or severe impairments. It “goes against our grain”. It also seems, on the face of it, to provide a clear-cut illustration of a situation in which an Advance Decision would not be appropriate.

But then I looked at what else Georgia and I discussed during the interview. And I found that we talked about Georgia’s medical history and activism. She told me about a new treatment for her impairment about which she was sceptical, as “I don’t feel it’s been researched properly”. She also worried that the parents of children with her condition were subject to “social pressure” to pursue the treatment for their children, but commented “I don’t think my life is that bad and I have not had the treatment. So why would it be amazing for them to have it?” This treatment is given during childhood, and would not be offered to Georgia. She wouldn’t need to consider making an Advance Decision to protect herself from being subjected to it if she were to lose capacity in the future. In itself, it therefore isn’t a reason to challenge the position that she does not need an ADRT.

What this point does illustrate though is that there are circumstances in which Georgia may contemplate refusing medical treatment. I think this is important, because it shows how important it is to go beyond asking a direct question that seeks to elicit information about specific treatments a person wishes to refuse. In Georgia’s case, such a direct question would establish that she does not wish to refuse any treatments in advance. Instead, it is key to have a comprehensive, nuanced discussion about the person, their experiences and values. Doing so with Georgia has cast doubt on the position that an Advance Decision would be inappropriate for her. Instead, it may be appropriate to provide her with examples of situations in which Advance Decisions can be used in other situations (i.e. not specifically to refuse life-sustaining treatments. Given that we know Georgia is not philosophically opposed to the refusal of medical treatment, and that she is keen to defend life with impairments, it is possible that she may come to a different conclusion regarding her personal use of ADRTs with access to further information. It is also possible that – particularly for a disability rights activist – a direct question regarding their intention to refuse treatment in advance may elicit a defensive response in the way that I outline above. A broader, more nuanced conversation allows for the nuance and person-centred approach that could enable a person to outline their views and values more comprehensively.

I think that I’ll be able to incorporate this finding into my analysis, and that it will contribute to knowledge about how best to support disabled people to access their right to advance decision-making. We shall see…

Exciting news – Launch of new project

As I hinted above, the last couple of weeks have been very busy. This is because Celia Kitzinger and I have launched a new project!

The Open Justice Court of Protection Project promotes transparency and open justice in the English Court of Protection – a court established by the Mental Capacity Act 2005 to make key decisions in the lives of disabled people who lack the capacity to make such decisions for themselves. It builds on Celia’s and my respective research in the Court of Protection, and is encouraging and supporting people to be Public Observers of court hearings, and write about them on our blog.

You can find out more about the project on our website openjusticecourtofprotection.org – It has really taken off, and attracted much more interest than we thought it might, proving that there is a real appetite for promoting transparency and public scrutiny of a court that makes, and sanctions, often life-changing decisions in the lives of some of the most vulnerable members of our society.

I am delighted to be co-directing this project with Celia, and look forward to making a difference and creating socio-legal change with it.

Life in general

Lots of work and excitement means that I am tired right now – and weak. But I am also intellectually, politically, and emotionally energised, and feeling competent and capable. It is such a tightrope being a person with disabilities and chronic illnesses who is passionate about her work, and has high standards about what she wants to achieve in life. Becoming (more) ill in the last couple of years has robbed me of a confidence I used to feel – that I could do anything I put my mind to, if I just worked for it (I am very lucky to have been brought up to believe that by parents who encouraged and believed in me). I have always assumed that things need doing, and my job is to work until they are done.

But chronic pain and chronic fatigue throw a spanner in those works, and life suddenly becomes unpredictable. You never know until you wake up in a morning how you’re going to feel that day – and whether you are going to be efficient, productive, and able to manage pain; or whether you’re going to spend most of the day in bed, crying because you know you’ll feel better if you eat, but you can’t get to the food – and you’ve had to cancel meetings and extend deadlines, and you hate letting people down. And unlike for most people, this isn’t a “sick day”, this is your life. You can’t guarantee that you’ll feel better tomorrow or the next day. What if this is yet another “progression” of your disease? What if this is the “new normal”?

But right now, I am working hard and enjoying myself. I feel like someone who can do things – not like a “disabled person” (I know those two categories are not mutually exclusive). All the symptoms, and the disability-bureaucracy are still there, but they’re not my focus. Hyper-focusing on work enables me to put them into the background, and concentrate on something good, and useful, and important.

It’s inevitable that exhaustion and pain, and sickness, and inability to work will be features of my life for the rest of my life. But I refuse to live my life on that basis. I will cross that bridge when I come to it, and enjoy doing what I love until then. One day at a time.

My experience of working from home; and why separate is not equal.

Earlier today I had a new experience. I delivered an Autism Awareness training session from my flat. I’ve been writing and running training courses on autism for over a decade, but today was the first time I’d done so using technology to deliver the session from home. This came about due to the restrictions we are all currently experiencing, arising from the Coronavirus Pandemic, and it generated for me a list of thoughts about what went well, what went not so well, and what we might do differently next time. I’d thought I might write up this experience – envisaging a sort of “How To…” contribution to the growing body of literature about “remote” pedagogy that is understandably sprouting up in the fertile ground of Lockdown. I had thought that I’d share how we navigated technology across a range of different platforms with varying capacities for running the software we were using, and how we communicated with people who had little experience of using this technology to get them logged onto the session, while not being able to see what they could see on their version of the platform. I thought I might share how disconcerting it feels not being able to see people’s faces fully as I talked to them, and how odd it felt to have a bunch of strangers in my home. I might well write such an account if I feel I have things to add that haven’t already been written about online interaction in the circumstances in which we currently find ourselves.

But there is another aspect of my experience that I didn’t expect to affect me in the way it did. There is a part of working from home in this otherwise very “public” part of my various work roles that I hadn’t even considered in my preparation for this afternoon, and in my angst-riddled role-playing about all the myriad ways in which things might not go according to plan. And it is an experience that my mind is left turning over, and wondering what I do with it – and what I do about it.

Funnily enough, this particular experience was one of liberation. It happened when I realised, as the session began, and I started to talk, that the participants could only see my face. This mattered because, unlike in face-to-face sessions, this meant that they couldn’t see my wheelchair. These were all people (with the exception of my colleague who was facilitating the session) who hadn’t met me before. They knew me only as a one-inch by one-inch square on a screen, and that was such a liberating feeling. I hadn’t realised until then quite how exhausting it is holding all the feelings that result from being on the receiving end of the Able Gaze. Other visibly disabled people will know what I’m talking about (and I know other groups of visibly “different” people articulate similar phenomena). It can be the quick-look-and-look-away, as people go out of their way not to be caught staring. It can be people falling over themselves to make it clear that they don’t actually see the chair (what?). It’s the ways in which people make exaggerated hand gestures as you pass – waving you on. Or the distance people leave around you, as though you might run them down – and how parents shoot out their arms to protect you from their incoming children (or vice versa) – do they realise they are taking part in this commedia dell-arte? Or it’s the silent wall of wondering – when you don’t know what people are thinking: if they’re thinking some of the things that other people will come out and say – like “what’s wrong with you?”, or “how long have you been wheelchair-bound?” or “have you got a license for that?” or “wow, you really have a job?” or “do you have anyone with you?”. Or if it’s the more hostile thoughts – like the people who will appear to offer to “help” you, as an opportunity to try to grab your bag, or your boob. It’s the people who explain that people like you are scroungers – not you of course. Just people like you. It’s the exhaustion of being constantly seen – until it comes to a time when it would be good if people did actually see, or think about, people like us; or factor in our concerns into their planning and shaping of society. Then we are very much not seen. The paradox of hyper-visible invisibility.

Anyway, this afternoon, sitting at home in front of my computer – none of these aspects of the Able Gaze was getting at me. I was an inch square in a grey box – just like everyone else. I even had to make verbally explicit that I was a wheelchair-user when it was relevant to a point I was making. It was a powerful experience. And the particularly striking thing is that while I knew I noticed all of those phenomena, I hadn’t appreciated quite how much of my time is spent adjusting for the ways in which they dart through my mind. And I hadn’t realised quite how very exhausting it is.

And then I thought, for just a very little while – wouldn’t it be heavenly to be able to work like this all the time! Wouldn’t it be lovely to be free of the Able Gaze! And then I got angry. Because why on earth should I retreat like that? We may all be experiencing the circumscribing of our opportunities to take up social space right now. But why should I be welcoming this as a longer-term solution to the un-expecting, uncomfortable, or hostile reactions to the fact that I navigate the world by wheels rather than legs? It is frankly terrifying how easy it is to succumb to, often seemingly benign, oppression – simply because it is the more comfortable solution. But that is unfair, and unjust. Enforced separateness is not equality. It never has been, and it never will be.

This experience has reminded me of the ways in which I share with many, many other individuals and social groups the discomfort, and the danger that goes with being visibly “different” – with daring to flaunt our transgression of society’s norms in society’s shared spaces. It has reminded me of how much work we have to do, before society is a truly safe and equal space. And it has also warned me of how very easy it is to settle for “separate” – when in fact, nothing other than equal should be acceptable to us. Ever.

#AutisticPhDiary 2 – Refusal of Medical Treatment, Advance Decisions, and Disability Justice

Week Two: 1st June – 7th June

This has been a very busy week!

I submitted my Examination Entry form this week – which is the paperwork in preparation for the submission of my thesis, and my viva. It’s all feeling very “real” now.

My PhD work this week has continued to focus on the chapter analysing the views of disabled activists on advance decision-making. I have been writing about the right to refuse treatment on which the concept of the Advance Decision to Refuse Treatment (ADRT) is based. Legally speaking, the right of a “competent” adult to refuse treatment is clear-cut and established in case-law (see, for example, Re. B (Adult: Refusal of Medical Treatment) 2002 2 All ER 449); however, as my data shows, in reality the process of refusing treatment is often experienced more accurately as a “bargain” with healthcare professionals, where inequalities of knowledge and status, as well as concerns about the long-term consequences of refusal may compromise a person’s access to this right. Some of my interviewees reported being seen as disruptive, or the ending of relationships with specific consultants as a result of their attempt to refuse treatment offered. I see this part of my analysis as contributing to my attempt to highlight the specific context in which disabled people approach the subject of advance decision-making – with experiences of treatment-refusal, and its consequences, being things with which my interviewees were very familiar. I have found that the activists I spoke to were supportive of the right to refuse treatment, even though their experiences in practice were often not so clear-cut.

This week, I also had the pleasure of being interviewed by Alex Ruck-Keene (a barrister at 39 Essex Chambers, who specialises in Mental Capacity law) as part of his Lockdown video podcast series. This was a great opportunity, for which I chose to talk about my research on Advance Decisions and Disability Rights. You can see my interview from Alex’s website here. In the interview, I talked about how challenging it can be, and the tensions that can arise when individual adults make (advance) decisions that may be understood as invalidating certain types of disabled existence. I set out my view, that no decisions are made in a social vacuum, and that both disability rights, and the right to individual autonomy are key political concerns that need to be pursued and protected. I feel strongly that the liberation of disabled people from stigma and discrimination should not come at the cost of oppressing people who make medical decisions for themselves that we find challenging. This discussion was particularly timely given the judgment handed down this week in what has been widely referred to as the “Stoma Case” – Barnsley NHS Foundation Trust v MSP [2020] EWCOP 26 (1 June 2020). The case concerned whether it was in the best interests of a man to continue receiving clinically-assisted nutrition and hydration. He had previously made an (invalid) Advance Decision, indicating that he would refuse treatment that would lead to him living with an irreversible stoma (he had prior experience of a temporary stoma). In deciding that it was in the man’s best interests to honour his wishes, expressed in the invalid Advance Decision, the judge was careful to emphasise that this was about respecting an individual decision, rather than a value-judgment about the lives of other people who live with stoma. You can read the judgment in full here.

One aspect of the role of the Advance Decision in this case that I find particularly interesting is the fact that in refusing an irreversible stoma, MSP was in fact refusing treatment of which he had some prior experience. It is a common view among disabled people, and was one expressed by the activists I interviewed, that life with disability is something that one can “get used to”, and that the reason behind many ableist assumptions about the quality of life of people with impairments is a lack of knowledge, or experience of life with those impairments. However, in MSP’s case, he wished to avoid the consequences of a treatment with which he had previously lived. This is similar to my own experience of making an ADRT, as one of the treatments I refuse is a treatment I have previously experienced, and which I found so horrific that my reasoning for refusing it in advance is not so much concerned with the consequences of receiving such treatment again in the future, but rather with the improvement to my quality of life in the present time, of knowing that I will never be in a position to have this treatment inflicted on me in future, and not be able to protect myself by withholding my consent. In this sense, I feel that while the concept of ADRT is generally considered to be future-oriented, it can also have a strong contemporaneous value to the person making it.

In other news, I was pleased to learn that an abstract I submitted for the Society of Legal Scholars (virtual) conference 2020 was accepted for the Practice, Profession, and Ethics stream of the conference. The title of my paper is “Seen to be done? An exploration of the role of the Court of Protection Transparency Pilot in advancing Disability Justice”, and it builds on my research as a public observer in court to advance an argument for the role of “transparency” in disability politics. The conference will take place 1 – 4 September, and more information is available here.

Life in General

Life is busy as always! I am working hard, preparing resources to deliver Autism Training online to mental health professionals at the end of the coming week. I am also excited to be looking forward to doing an online Q and A session for Scottish Autism, discussing advocacy and self-advocacy for autistic people. This will be happening on a date to be confirmed, sometime towards the end of July. More info to follow.

I also continue to be proud of the impact we are making with the Autistic Mutual Aid Fund. It has been a special privilege this week, in the face of global reminders of racial injustice, to be able to reach out to Black autistic advocacy organisations in order to ensure that everyone benefits from the community generosity encapsulated in the fund. You can find out more about the fund, and contribute or apply for a grant via this link.

I’m still struggling with the exhaustion, guilt, and fear of being a disabled #AutisticsInAcademia approaching the end of my PhD. Most of all, I love this work (and the activism that surrounds it) so much, it feels heart-breaking to worry that I may not get the chance to do more of it – in my mind, this is a risk mostly because nobody is likely to want to employ someone who looks as “weak” as me. I get myself past this fear by reminding myself that the majority of the work I enjoy most is unpaid anyway so there’s nothing really to stop me carrying on post-PhD – the silver lining of capitalist exploitation!

Right now, I’m excited about the week ahead – especially about spending more time with my data. But I need to rest, otherwise pain will get the better of me.

Wishing you a fulfilling week.

#AutisticPhDiary 1 – A Journey Begins…

This is the first post in a new blog-writing project I have decided to undertake during the last few months writing my PhD thesis. I am due to submit my thesis no later than 29 September 2020, and that date is beginning to loom frighteningly close on the horizon. I am feeling lots of things about the imminent end of a 5 year-long “journey”. There are two main reasons why I have decided to document these final few months – the first is personal, as regular writing (particularly for an audience) helps me to document, process, and structure my experiences; thereby making them less overwhelming. The second is that while there are some great examples of literature discussing how the viva process may be adapted for autistic doctoral students, (see for example, Martin 2010; Chown et al., 2016) what I would really like to be also able to read is an account of the experiences, and emotions of an autistic PhD student approaching the submission of her thesis; so I have decided to create such an account. I have written elsewhere (e.g. here) about the impact of my autistic identity on my self-confidence as a researcher, and it is certainly the case that this aspect of me is having an impact on how I am making sense of the prospect of a period of intense hard work alongside significant transition.

Of course it goes without saying that my autism is not the only “part” of me that will be relevant in what I document in this series – other characteristics such as my physical impairments and my part-time employment, as well as the wider social context (not least the fact that we remain in the grip of a pandemic) are factors that influence my views and experiences, and therefore my writing. It should also go without saying that this account is the account of one autistic researcher[1] , and is not in any way attempt to represent the voices of any autistic except myself. It should therefore be approached as a “diary” rather than as a “how-to guide”.

I aim to post a weekly update, each Sunday evening.

Week One – 25th May to 31st May

I am currently working on one of the empirical chapters of my thesis. This one uses interviews with 14 disabled activists to explore their views on advance decision-making. Advance decision-making (including Advance Decisions to Refuse Treatment and Lasting Power of Attorney) enable an adult in England or Wales to make medical decisions in advance of a time when they lose the mental capacity to do this themselves; or, to nominate someone else to make welfare decisions in their best interests. I am interested in the ways in which disability-identity and politics influence the ways disabled people approach this topic, and how we may be supported, and support each other to make informed decisions about this key aspect of our lives. This week, I have been particularly looking at the roles my interviewees envisaged for Disabled People’s Organisations in providing information and support on these topics. I am really excited about this part of the study in particular, as I think it has the potential to generate the kind of “real-world” impact about which I am particularly passionate.

I made an exciting breakthrough in my understanding of the methodology I am using (Thematic Analysis) too this week, as feedback from one of my supervisors pointed out that I had fallen into a trap of beginning each sentence with an individual pseudonym, and basically simply listing the relevant quotes from my data. Having read the feedback, I had a mental conversation with myself that went roughly like this:

“It does sound wrong with so many names at the start of sentences”

“… But if I make it less tied to individuals, I’m going to be generalising beyond that which is supported by the data. That feels uncomfortable…”

“Why is that?”

“… It’s because you are only listing quotes. You’ve rushed into writing and haven’t allowed your thinking to “cook” sufficiently. This means you haven’t actually added any analysis in what you’re writing. It feels wrong because it is wrong. You need to go beyond the individual quotes and think about what they tell you about the topic.”

I know that there is fabulous methodological literature on Thematic Analysis, that expresses precisely this issue much more eloquently than I have put it here, but there was something very special about the fact that this was my discovery (having been pointed in the right direction by my supervisor) in relation to my data that made this a powerful learning experience. I always find it easier to learn from concrete experiences like this, rather than from general, theoretical teaching. Obviously nobody likes having mistakes pointed out but if there is one thing I have particularly enjoyed about my PhD experience, it has been the opportunity to have time and space to really “grow” my thoughts and my writing over time and to be able to treat feedback as the kind of learning experience that I think it is supposed to be.

I have also begun working through the requirements for submitting my thesis. I have had a lot of support from my disability coordinator at Uni to help me locate the relevant information, and we are getting together a plan. For me, this includes having as much concrete information as possible, as soon as possible so that I can picture what the processes of submission and my viva will look like – preferably in a visual format. I have also worked with my learning support worker to make a condensed contents of the guidance for thesis submission so that I know what’s where when I need to find things. This is an important process, as it stops me being overwhelmed by too much information. These are the kind of thing that are the absolute hardest for me, and other parts of the PhD of which I’ve been most afraid throughout. My “survival strategy” is a combination of pragmatism (making sure I have all the relevant information when I need it, and being proactive in making sure I have access to this) and “escapism” (I am able to “lose myself” in the writing, and imagine myself doing it for its own sake – because I have something to say, much the same as my approach to writing this blog). This combination of approaches means that everything gets done that needs to be done, but I also have clear headspace, with anxiety under control, that enables me to get on and write. I will keep you up-to-date with the success (or otherwise) of this approach!

Life in General

There is so much going on in the world, and in my life right now that sometimes there is a risk that my PhD gets lost in it all. These are genuinely worrying times in which to be alive – especially as a disabled person. I feel frightened about being identifiably disabled and about being as “open” and vocal as I am about disability -related aspects of my life. However, I accepted a long time ago that I am incapable of being quiet, and of “playing the game” – that ship has definitely sailed. And therefore, I am relishing doing everything I can with the circumstances I have been given (e.g. check out the Autistic Mutual Aid Fund which is open for contributions and applications).

Also, it is almost impossible to explain how much of a full-time job just being a disabled person is. Before we even get to work, or study, or any other aspect of citizenship, we have to negotiate a daily onslaught of self-advocacy demands. At present, I am attempting to get some specialised mobility equipment that I need while in Lockdown, as my flat is not sufficiently accessible for my needs. The equipment will cost £130, but while I have a supportive physio who is doing her best, she is unclear as to how to obtain the funding required. In the meantime, I have had to use inappropriate equipment which is caused even more shoulder and back pain than I usually experience, and has left me with yet another reminder of just how much my dwarf body does not “fit” in this world. I have then had the humiliating experience of having to explain to the physio the exact nature of my body’s failure to conform. Self-advocacy is supposed to be “empowering”, but when you are up against an oppressive system that requires you to articulate your “need” in relation to its deviance from social norms it does not feel empowering. It feels like embarrassing disgrace. I succeeded in getting the information across to the physio, and now need to wait an unspecified length of time for a decision on whether we will be successful in gaining funding. If not, I will have to spend more of my own money on being as mobile as possible, and holding back the deterioration of my joints as much as I can. Compared with the roughly £10,000 my mobility has cost me so far this is a tiny amount, but my savings have now evaporated, and anyway – it’s the principle!

You may wonder what any of this has to do with a PhD. The answer is “nothing” – and that’s the point! I include this anecdote simply as an example of one of the countless additional tasks that are necessary alongside my PhD, and all the other necessary aspects of life. It may not seem like a big thing, and in fact, compared with other things that are also going on for me personally, and for us globally, it is a small thing. But these things get inside your head. They take up time, they divert your attention, and most of all they leave you wondering how anybody with so many “needs” is ever going to cross that PhD finish-line.

The Bright Side

Things that help me:

  • I have a lot going on, and my attention is easily distracted. I use my ability to hyper- focus to my advantage, and I concentrate entirely on whatever I happen to be doing at that precise moment. This could be working on my thesis, it could be activism, it could be making food, making my bed, taking a bath… any of the things that my day involves. The key thing is, it gets all my attention. Everything else will still be there when I have finished.
  • If I get feedback on any of my writing drafts, I print out the annotated draft and work the amendments into my original. I then save the amended original, but I don’t save the annotated version (the one from my supervisor) with my drafts. It is still available (in a folder in my emails) but it doesn’t get confused with other versions of the draft.
  • Linked to this, I found it easier to separate out the different “themes” of my analysis as the chapter is growing. It makes them much easier to navigate – especially as my visual processing is not always reliable.
  • Speaking of “processing” (and sensory/physical issues to do with working) I use dictation software, and a screen reader to help me produce my work. Dictating not only dramatically reduces the strain, and therefore the pain on my arms, shoulders, and neck, but it enables me to work when pain and fatigue would otherwise make this impossible. The positive impact on my self-esteem is quite amazing – as my life becomes much less a series of failures to navigate the hurdles my body puts in my way – and much more a routine of succeeding. Likewise, a screen reader enables me to listen back to what I have written, and to proof-read, in a way that my brain can hold onto. This means that my work feels much more “controlled” and much less a process of guess-work.
  • I have a whole heap of art projects, and books on the go. I immerse myself in these when not working with all the intensity I devote to anything I do. I am really lucky as it happens, that all my favourite pastimes now necessarily can be done from home. It makes Lockdown much less of a disruption than it must be to more sociable, physically-able people.

This week, I will be carrying on writing up the analysis for the Advance Decision chapter. I will let you know next Sunday how things have gone.


[1] Incidentally, the widespread tendency to insist that any autistic speaking or writing be prefaced with the qualification that “I don’t speak for all autistics” is something with which I am profoundly uncomfortable. This is not because I believe it to be untrue that all autistic people are unique and possessed of their own individual “voice” but because this is so obviously true as to make me suspicious that the insistence on its repeated emphasis serves more than anything to atomise, depoliticise, and ultimately silence autistic “voice” and sabotage attempts at autistic community-building. Autistic people are (at least) as individual, and heterogenous as any other social group. However, our experiences of the social world and its oppressive and exclusionary nature, tend to be boringly, frustratingly repetitive.

Autistic Mutual Aid Fund – COVID-19 Donations Please!

Donate to the AUTISTIC MUTUAL AID FUND here.

Apply to the Fund here. 

These are tough times, with most of us reeling from the impact of Coronavirus. And with businesses, schools, and universities closing their physical premises, the supermarket shelves emptying, and plans being cancelled, we’re facing a disturbing present, and an uncertain future.

And for some members of our autistic community, the future is particularly daunting.

Many autistic people work as self-employed speakers, trainers, and other forms of autistic advocate. They perform a role that benefits all of us – autistic people, parents/carers, teachers, and health and social care professionals; and all who love and care for autistic people.
But with conferences and events being cancelled, and schools and other venues closing as a result of the ongoing COVID-19 emergency, they are facing a devastating cut in their livelihoods.

And we want to do anything we can to ‘give back’ to these members of our community.

So, we’re setting up a fund – The Autistic Mutual Aid Fund – with the aim of making life just a bit easier for our autistic advocates at this challenging time [Please note that the organisers of the Fund will not be eligible to claim from it]. 

Donate to the AUTISTIC MUTUAL AID FUND here.

Apply to the Fund here. 

Here is some information about the Fund:

Who/what is the Fund for?

The Autistic Mutual Aid Fund is for autistic people who are self-employed, working in the field of autism advocacy (broadly defined), who are facing significant financial losses as a result of the COVID-19 outbreak, and its impact.

It is intended to provide a ‘Helping Hand’ – covering relatively small, discreet costs incurred by people in this position. It is NOT intended to replace all, or most of the income lost; or to cover all of the outgoings of self-employed autistic advocates – a)because this is the role of the government; and b) because the fund is likely to be quite small-scale, and capable of making only small discretionary grants.

Examples of things that may be covered by grants from the Fund include, but are not limited to:

Costs of taxi travel where travel on public transport is not possible for either autism- or virus-related reasons; costs of equipment or software etc to move business online, and advertise new services; contributions to specific household/utility bills; costs related to maintaining autistic equilibrium in challenging times (e.g. purchasing specific groceries for restrictive diet, purchasing/replacing stim toys, replacing specific toiletries, or other sensory-related products that run out during period of income-loss.

Other requests will be considered at the Organisers’ discretion.

More about the Fund:

At the current time, it is uncertain how many donations the Fund will attract, and over what period of time. If the Fund proves self-sustaining, it is possible that there will be scope to continue it beyond the period of the COVID-19 outbreak, and perhaps to broaden its scope. 

Given the level of current uncertainty, it is possible that other, larger funds may emerge, with overlapping aims to this one. In such circumstances, the organisers retain the right to close the Autistic Mutual Aid Fund, and to donate any remaining balance of donations to the similar, larger Fund. 
All applications to the Autistic Mutual Aid Fund will be considered by the Organisers (Gillian Loomes and Shona Murphy), and granted at our discretion. Nothing in this publicity, or in the application survey, constitute an offer of a grant. 

The maximum amount of any single Helping Hand grant will be £100. It is possible that this may be revised in future, depending on the status of the Fund. However, we ask applicants to bear in mind that this is likely to be a small fund, and is intended as a gesture of support and ‘good will’ to make lives just a little bit easier in challenging times. We ask you to respect this gesture, by a) being thoughtful and sensible in the requests you make of the Fund; and, b) being understanding and respectful if the Organisers need to turn down your application for any reason.

Who are we?

We are:

Gillian Loomes
Gillian Loomes is an autistic scholar-activist. She held a teaching fellowship at ACER (the Autism Centre for Education and Research), University of Birmingham for several years, and has experience as a research consultant; including for the Autism Education Trust, the International Disability Rights Monitor, and the Essl Foundation. Her recent publications address topics relating the autism as social identity, ‘autistic feminism’, and the role of research participation and collaboration within the politics of disability rights. Gillian works for Leeds Autism AIM, and is a convenor of PARC (the Participatory Autism Research Collective). She tweets regularly, and can be followed @loomesgill.

Gillian’s website is voicespaces.co.uk

Shona Murphy
Shona is an autistic autism trainer. She has an MA in Autism, where she researched autistic parenthood, and also does consultancy in autism research, supports autistic people, and does a variety of voluntary work supporting and advocating for autistic people.

Shona’s website is shonamurphy.me 

Donate to the AUTISTIC MUTUAL AID FUND here.

Apply to the Fund here. 

GLPhDProgress #1: Do (In)actions have Consequences? – Questioning accountability in the Mental Capacity Act 2005

[Side note: Happy New Year! I’ve decided I’m going to try to write a blog summarizing my PhD work, and related thinking, every week. Wednesdays are traditionally my day off, so now seems as good a time as any to get going…]

Why do we obey the law?

This is probably one of those jurisprudential questions that verges on the unanswerable, perhaps precisely because there are so many possible answers. And indeed, the question of obedience to the law has been debated extensively among legal philosophers (see, for example, the edited collection of readings on “The Duty to Obey the Law” by Edmonson, 1998). My aim here is not to try to provide an answer to this philosophical question.

But I have been reflecting on what “accountability” means in the context of the Mental Capacity Act 2005: taking as my starting point the perhaps rather simplistic assumption that if a law exists, its impact should be discernible in the consequences of its observance, but also of its transgression. I.e. If you break the law, you should hold a reasonable expectation of personal consequences as a result.

As I have been working through the analysis of my dataset for my current project (a textual ethnography of research ethics application processes for research involving participants who lack the capacity to consent – engaging ss.30-34 MCA 2005), I have noticed how many times I’ve referred to the “responsibilities” of the researcher – their “obligations” and “duties”, under either the law, or other forms of professional or institutional regulatory governance frameworks. And this has led me to question the nature of these responsibilities – particularly, what happens if the researcher fails to meet their legal obligations under the MCA 2005?

It has seemed rather difficult to identify any single, universally applicable answer to this question. But here are some of my findings and thoughts so far:

  • Institutions sometimes refer to the MCA 2005 in their ethics application forms, but they don’t always. When they don’t do this, they direct researchers working with participants who “lack capacity” to NHS research ethics protocols. If they do refer to the law, this may be to inform the researcher (sometimes erroneously) as to what the MCA 2005 “requires”.
  • The MCA 2005 sets out, in general terms, what is “required” of the researcher (although it is necessary to consult secondary legislation, and additional legal and professional guidance documentation for definition and clarification).
  • The MCA 2005 states that research that does not abide by the requirements set out in the Act is “unlawful”. However, it makes no mention of any consequences arising directly from such illegality.
  • I have been unable to find any cases where researchers experienced legal sanctions as a direct result of failure to adhere to the MCA 2005.
  • It seems most likely that consequences of failure to follow the Act may arise indirectly, depending on the type of research undertaken, and what this involves for participants. For example, if research involving the administering of a specific treatment is undertaken involving participants who lack the capacity to consent, and the framework set out in ss.3–34 MCA 2005 are not followed, the research itself is “unlawful”. This means that the treatment administered was given without the required “best interests” process set out elsewhere in the Act, and would therefore constitute assault/battery. It is perhaps harder to think how this may apply to research that is less invasive (e.g. research involving interviewing) – although as the obtaining of “intrusive” personal data via unlawful research may be construed as fraudulent, it is likely that redress may be sought via fraud, or data protection legislation.
  • My analysis of the full legal, ethical, professional, and institutional regulatory frameworks that apply to researchers working with participants who lack the capacity to consent has shown that the majority of “consequences” relating to transgression of the framework set out in the MCA 2005 are to be inferred from institutional/professional regulation mechanisms that indirectly invoke the Act – e.g. Research Governance Codes of Conduct that require researchers to follow any law relating to their proposed research undertakings. As such codes form part of the studentship/employment contracts existing between the researcher and the institution, personal consequences (e.g. dismissal for gross misconduct) are likely to be swift and devastating to the researcher.
  • This last point reinforces, and reminds me of how important it is that I research and understand the Mental Capacity Act 2005 as a socio-cultural structure that exists within a complex matrix of social domains. In this instance, the “reach” of the MCA 2005 is perhaps felt most acutely, not in the Court of Protection, but in the university Human Resources department.

I have also been trying to identify wider consequences of failure to adhere to the MCA 2005. The Act brought with it a new criminal offense – that of “Ill treatment or wilful neglect of a person lacking capacity” (s.44 MCA 2005).

Some case law involving this offense is available here: https://www.39essex.com/case_tag/criminal-offences-ill-treatment-wilful-neglect/

Another case of interest to my own research (that relating to Advance Decisions to Refuse Treatment) is that of Jillian Rushton: a retired nurse who received Clinically Assisted Nutrition and Hydration via a feeding tube following a brain injury, contrary to the provisions of her ADRT – seemingly due to a failure of healthcare professionals/organisations to maintain and communicate her ADRT. The case (NHS Cumbria CCG v Mrs Jillian Rushton (by her Litigation Friend) and Mr Tim Rushton [2018] EWCOP 41) is reported here (https://www.bailii.org/ew/cases/EWCOP/2018/41.html) – though is of limited relevance to the issue of sanction for non-compliance with the Act, because as Mr Justice Hayden made clear in the judgment, he was not asked to consider matters of responsibility for failure to adhere to Mrs Rushton’s ADRT, and did not address this in the judgment.

Lastly, for now, my own ethnographic work in the Court of Protection identifies a consequence for Local Authorities of failure to adhere to an aspect of the MCA 2005 that has widely been interpreted as a bureaucratic burden for LAs – the Deprivation of Liberty Safeguards (DoLS). On more than one occasion, hearings I had planned to attend were vacated at short notice, at the request of a Local Authority that was unprepared for the hearing. However, on one occasion, the LA in question assumed the judge would agree to vacate, and therefore did not attend the hearing. This was not, in fact, the case. The judge had not agreed to the request to vacate, meaning that an (unsurprisingly short and unproductive) hearing took place, with costs being awarded against the Local Authority.

I would like to expand this list of “consequences of non-compliance with the MCA 2005” – by adding themes, and details, and by considering the impact of non-compliance from multiple perspectives.

If you have thoughts or experiences to add, please get in touch!