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.

#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.

Mental Capacity and Future Disabled “Voice”: Initial Thoughts on Disability and Advance Decisions to Refuse Treatment

Background: Disability and Medical Intervention

When I was thirteen, a doctor wanted to break my jaw.

I have multiple skeletal abnormalities due to gene deletions and mutations, as a result of which, I’ve had a long history of interactions with healthcare professionals. The encounter with the orthodontic surgeon was one such interaction.  He proposed surgery for what would have been largely cosmetic reasons, and we decided against it. I compare this encounter with what happened when I first visited my hand specialist. I was 15, and had just been diagnosed with a specific deformity affecting my forearms and wrists. After telling me about the condition, the specialist explained that as I had stopped growing, there was no appropriate treatment, He went on suggest that there had been a number of surgical treatments attempted for this extremely rare condition, that the reason for so many varied attempts was that surgeons were keen to “make their name” by devising complex surgical interventions, but that none had a strong likelihood of a positive outcome, and many had made patients’ symptoms worse. He also told me that surgical intervention was more common in the U.S. than in the U.K. – because the system of medical insurance made surgeons keener to pursue interventions that could be funded by insurance companies.

I am not concerned here with the “truth” or otherwise of these issues. I am using these experiences to set out the context that forms my experiences as a disabled person, concerning medical treatment. Encounters such as this mean I grew up with the impression that doctors were likely to propose aggressive surgical treatments, not on the basis of what might provide the best outcome for me, but on the basis of what they “could do”, or of what may be in it for them, and their career. I certainly was not encouraged to believe that I could rely on a doctor to have my “best interests” at heart, or to consider the impact of my conditions and related treatments on my life outside of their consulting room. This, along with humiliating examinations, and rooms crammed full of curious medical students, made me feel like a series of “problems” to be “fixed”.

I know I am not the only disabled person to have such formative experiences. I know that many of us have stories to tell of such oppressions at the hands of healthcare professionals. I also feel strongly that such oppressive encounters are not unique to medical environments, but rather they reproduce and echo the ways in which disabled people are viewed and treated in, and by, society more widely. Such clinically-situated oppressions manifest themselves in two ways:

  • Coercion into unwanted or unnecessary treatment, with the aim of enabling people to conform to normative expectations of cognitive, emotional, or physical presentation.
  • The withholding of treatments, based on assumptions or judgments about the “worth” of a disabled person’s life. This may include placing DNACPR (Do Not Attempt Cardio-Pulmonary Resuscitation) orders on disabled people, without discussion or consent, as a result of views about the person’s “quality of life”.

My own experiences, and the culture within which I exist as a disabled person, are some of the reasons why I am passionate about autonomy and self-determination, particularly regarding interactions with healthcare professionals, and with medical systems and structures. There are lots of ways of tackling social injustices around healthcare, but it seems a good strategy to begin with the tools we already have. One such category of tools comprises the rights enshrined in existing legislation. So, for this reason, part of my PhD research (which focuses on issues around the Mental Capacity Act 2005, and its impact on the “voice” of disabled people), is concerned with Advance Decisions to Refuse Treatment (ADRT). In this blog, I am setting out my emerging thoughts about the concept of ADRT, and what it may offer for disabled people – particularly in conjunction with another existing legislative instrument: the United Nations Convention on the Rights of Persons with Disabilities (the UNCRPD).

Adults with Capacity and Treatment Refusal

As an adult with the mental capacity to make decisions about medical treatment (according to the framework set out in the Mental Capacity Act 2005), I don’t need to worry overly much about the possibility of being subjected to medical interventions to which I have not consented. The right to self-determination and autonomy for “competent” adults, with regard to the refusal of medical treatment has been enshrined in English case law – for example, in Re T (Adult: Refusal of Treatment) [1993] Family Law 93, as Lord Donaldson MR stated, in analysing the tension between the rights of the individual (to self-determination – the right to live her life as she wishes), and of the society in which the individual lives (in upholding the principle of the sanctity of life), “in the ultimate, the right of the individual is paramount” (at p.113). Concerns about the conflation of the “competence” of an individual to make a decision with her reasoning for that decision (as suggested in Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449 – see Stauch, 2002) have, at least as a matter of legal theory, been addressed by the MCA 2005 – in particular s.3 MCA 2005, that sets out the “process” criteria by which capacity is assessed, in conjunction with the overarching principles of the Act, stating that capacity is to be presumed (s.1(2) MCA 2005), and that an objectively “unwise” decision is not grounds for an inference of lack of capacity (s.1(4) MCA 2005).

In reality, life as a disabled person is often more complex than this. During the interviews I have carried out so far with disabled people about their views on advance decision-making, participants have told me a great deal about such complexities – people feeling compelled to accept “talking therapy” in order to maintain access to medications they believe benefits them, people who worry about losing the cooperation of doctors they rely on for medical evidence that impacts their education, employment, or access to social welfare, people who feel pressure from family members, and others close to them, who view their refusal of treatment as “giving up” or as “not trying hard enough”. So, there is obviously a lot at stake for disabled people in refusing treatments, even when our mental capacity to make such decisions is not contested. But what about if we lose this capacity? What about people in my situation – who, as a result of our experiences, fear the loss of control, and the surrendering of this control to healthcare professionals who have so far failed to earn the right to such profound, fundamental trust? Well, ahead of such a loss of capacity, a loss of control, we have an option enshrined in law – we have the right to make an Advance Decision to Refuse Treatment (ADRT)

Advance Decisions: What are they?

Advance Decisions to Refuse Treatment (ADRT) have historically been known as “Living Wills”, and, prior to their enshrining in statute in the Mental Capacity Act 2005 (the MCA 2005), they existed in Common Law. The current ADRT legal framework is set out in ss.24-26 MCA 2005, which state the following:

  • S.24 MCA 2005 (General Provisions): A capacitous person may make an ADRT after reaching the age of 18, to ensure that if in future in given circumstances, a medical treatment is proposed for them, and they lack the capacity to consent to such treatment, the treatment should not be carried out. This decision may subsequently be withdrawn while the person retains capacity, and such withdrawal need not be in writing.
  • S.25 MCA 2005 (Validity and Applicability): The ADRT will not be valid if a) it has subsequently been withdrawn; b) the person who made it has subsequently granted a Lasting Power of Attorney, giving someone the power to give or refuse consent for the treatment to which the ADRT relates; or, c) the person has done anything else “clearly inconsistent with the advance decision remaining his fixed decision”. The ADRT will not be applicable if a) the treatment proposed is not that specified in the ADRT; b) any circumstances specified in the ADRT are absent; or, c) there are reasonable grounds to believe that circumstances exist that the person did not anticipate at the time, and which would have affected the decision if they had anticipated them. There are further requirements of an ADRT relating to life-sustaining treatment – in order to be applicable, such a decision must be accompanied by a statement to the effect that it is to apply even in circumstances where the person’s life is at risk. Further, the decision must be made in writing, and it must be signed and witnessed.
  • S.26 MCA 2006 (Effects of an ADRT): If a person has made an ADRT that is valid and applicable, a) a person does not incur liability for carrying out or continuing treatment unless, at the time, s/he is satisfied that an ADRT exists and is valid and applicable; and, b) a person does not incur liability for the consequences of withholding or withdrawing a treatment from a person, if, at the time, they believe an ADRT exists that is valid and applicable.

This means that, in theory at least, I have the legal right to make provisions that ensure I don’t need to live in fear of being subjected to treatments in circumstances where I lack the capacity to give or withhold consent. I don’t need to worry about doctors wanting to “make their name” with my body, or to make money through treatments that are unlikely to make me better, and that might make my prognosis worse. Such fears don’t need to dominate my life. There is lots of discussion about the metaphysical dilemmas surrounding the concept of ADRT, as a mechanism for “present me” making decisions for “future me” – and whether I would be the “same person” in future, if I lost capacity (see, for example: Dworkin, 1993; Dresser, 2018). But for me, the scenarios I’ve set out here illustrate a key contemporaneous value of the concept of ADRT for me, as a disabled person – in that they give “present me” rights to live, at least in theory, free from fears about what might happen in my future.

Theory and Practice

There is a lot in the analysis I have presented here that applies “in theory” – with rights set out in the “black letter of the law”. However, as in most areas of the law, the situation in practice is considerably less clear. Despite the possibility for ADRT to confer legal rights that are likely to be especially beneficial to disabled people, there are also several complexities to address:

  • How do disabled people approach the concept of refusing treatment within a social and cultural context that controls the giving and withholding of medical treatment based on a set of values that views us as “lesser” than abled people – that makes judgments about our worth, and our “quality of life” based on ableist assumptions and expectations? (This is the focus of the “legal consciousness” study that forms one of the chapters of my PhD).
  • How do the rights of disabled people to exercise their legal capacity to refuse future treatment exist alongside those of abled people? Particularly, given the existence of a wide range of conceptual and practical problems impacting the population as a whole; with regard to access, uptake, and implementation of ADRTs, what are the best ways to approach these issues for disabled people? To what extent is it appropriate to argue for better access to ADRT for the general population, while ensuring that disabled access forms part of this overall agenda? And what “special” protections and affordances might be offered by tools and strategies that relate specifically to disabled people, and the culture of oppression that affects us uniquely (such as the relevant provisions of the United Nations Convention on the Rights of Persons with Disabilities)? This forms the basis of a separate but related doctrinal analysis on which I’m currently working.

It would be great to hear of any thoughts people might have on these themes. In particular, I am keen to hear from disabled people about our experiences of refusing medical treatment (including those relating to mental ill-health), and of attempting to make ADRTs, or supporting others to do so.

You can contact me via the contact page on this website, via Twitter (@loomesgill), or by email (lwgl@leeds.ac.uk)

If you would like to find out more about Advance Decisions to Refuse Treatment, check out compassionindying.org.uk – or to access a template to plan your own ADRT, visit mydecisions.org.uk.