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…

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.

Introducing Project Evaluation: How can it help our voices to be heard? [Video + Transcript]

Alongside my academic research and other arts and activism, I work for an advocacy organisation in Leeds called Advonet. Part of this role has involved being a work-based evaluator for a very exciting endeavour – the Leeds LGBTQ+ Health Inclusion Project. This is a project that uses self-advocacy/peer support, and the training of healthcare professionals to address the exclusion and inequalities experienced by members of LGBTQ+ communities who have “additional needs” (i.e. who are autistic, have a learning disability, and/or who experience mental health difficulties).

My role as evaluator involves observing the project as it develops – sitting in on self-advocacy workshops and training sessions, and talking to project staff, and participants, to find out what they think about its achievements. In order to do this, it is essential that I am able to build a rapport with all those involved with the project, but I’ve found a problem with this, as it’s been difficult to communicate what my role involves. This has meant that project staff are unsure how to introduce me, and people are slightly concerned as they don’t know what to expect from me. This is especially challenging, given the personal, sensitive nature of much of the discussion that takes place in the workshops and training sessions. I needed to come up with a way to communicate what I’m trying to achieve.

Alongside this, I’m keen to start a conversation within the voluntary sector more widely – to discuss how we evaluate ourselves: how we celebrate our many achievements, and how we make our work even better.

So – I came up with the idea of making a video presentation (using PowerPoint and YouTube), in order to communicate my ideas around project evaluation – and, particularly, how we might use evaluation as a tool to ensure that all those involved in our projects and partnerships have the opportunity to have their “voice” heard in taking the work forward.

This style of presentation/communication itself is a work-in-progress. Things I’m aware of so far include the fact that the video is too long overall, perhaps because I’m communicating to multiple audiences. I think it may be difficult to hold people’s attention for so long. I’m also aware that in places, the text on the slides doesn’t sync with what I say in the audio. This is because as I was figuring out my working method, I edited things considerably. In future, I think I’ll be much clearer about what I’m doing, and about how much content I’ll be aiming to include altogether, meaning things will be much more fluently presented.

I’d really like to know how else I might develop these kinds of communication tools (both conceptually and technically).

Here is the video. I’ll copy the transcript below:

Transcript

Slide 1

Introducing Project Evaluation: How does it help our voices be heard.

Welcome to this short film, providing an introduction to project evaluation– and explaining the evaluation of the Leeds LGBTQ+ Health Inclusion Project.

This film is for anyone involved with the project – including project facilitators, peer supporters, self-advocates, and funders; along with anyone interested in carrying out project evaluations for other, similar, projects.

A transcript of what I am saying is available in the “notes” section of the PowerPoint file, or in the description box below the video, if you’re watching on YouTube. If you have any questions, contact details are provided at the end of the film – feel free to get in touch.

Slide 2

Hi,

I’m Gill Loomes, project evaluator for the Leeds LGBTQ+ Health Inclusion Project.

As a disabled person, I care about disabled voices being heard, and as a researcher, I want to use my skills to make that happen.

In this short film, I explain what project evaluation is, particularly how it’s being done at the Leeds LGBTQ+ Health Inclusion Project, – including how you can get involved, and how it can help us to be heard…

Slide 3

The word “evaluation” can have different meanings. But, in broad, simple terms, it means something like “checking the progress or merit of a thing, according to agreed standards”. When it comes to projects like the Leeds LGBTQ+ Health Inclusion Project, this is often thought to mean checking whether the project is delivering “value for money”.

You might think that the process of evaluating a project, such as the Leeds LGBTQ+ Health Inclusion Project, sounds like a rather boring job, that produces pages of words and numbers that no one will ever read. Or you might see it as obligatory – something we have to do, in order to keep the organisations that fund our projects happy. And it is often the case that funders require projects to evaluate their progress – for example, the Leeds LGBTQ+ Health Inclusion Project is funded by the Government Equality Office, which requires all projects that it funds to provide evaluations – in order to check how funding is being spent, and also to provide information that might be useful to other, similar projects.

But, depending on how it’s designed and carried out, a project evaluation can serve another important purpose – one that should matter a lot to advocacy, and self-advocacy organisations: a project evaluation can be an opportunity for all those involved in the project to have their say, and to have their voice heard – about how the project is run, about the difference it makes in society, and about what is working, and what is not working.

In this way, an evaluation can be an opportunity to promote equality within a project, and to ensure that everyone’s voice is heard. As it says here – [reads quote above from House, 1993]

So, let’s take a look at how a project evaluation can work – and how the evaluation of the Leeds LGBTQ+ Health Inclusion Project aims to ensure that the voices of everyone involved in the project are heard.

Slide 4

There are 2 more slides in this film. They explore the following questions [reads questions on slide]

Slide 5

So, the first question we are going to think about is “What is Project Evaluation – and how can it help our voices to be heard?”

We can think about what an evaluation is by answering 3 questions:

How (is the evaluation done) – an evaluation looks at something systematically – that is, it’s organised, and happens according to a plan.

What (does the evaluation do) – it produces information about a project, and the effects of the project.

Who (is the evaluation for) – anyone who is interested in the project; how it works, and how it can be improved. 

We can think about what an evaluation considers:

Project goals: How has the project met their goals? Have their goals changed in response to the priorities of project participants?

Decision-making: How does decision-making happen within the project? Is it efficient? Who gets a say in important decisions? Who is responsible for making sure things get done?

Different explanations: When evaluating a project, how do you ensure that different views about the project and how it works are represented?

Different users: When planning what questions to ask in an evaluation, think about who is going to use the evaluation. What do project participants need to know about the project? What do project funders need to know? How do you ensure you ask, and answer the right questions?

And we can think about what is important to make sure that an evaluation helps voices to be heard:

The evaluation must be responsive to the needs of project participants.

It can be goal-flexible, ensuring that different goals prioritized by participants are represented.

It ensures that alternative explanations and perspectives are represented and explored.

And it considers the needs of all users of the project, and the evaluation.

On the next slide, we’ll see how the evaluation of the Leeds LGBTQ+ Health Inclusion Project considers each of these things in its evaluation.

Slide 6

The LGBTQ+ Health Inclusion Project works to improve access to healthcare services for members of LGBTQ+ communities who are autistic, who have a learning disability, and/or who experience mental health difficulties. It does this by organising self-advocacy courses, and peer-support for members of these communities, and by offering training, designed and delivered by people with lived experience of these issues, to healthcare professionals.

The Government Equality Office, which provides the funding for the project , needs an evaluation of how the project works, and what it achieves. It needs to be able to show how public money has been spent.

The evaluation also provides an important opportunity for participants to have their say about what has worked, and what they might do differently.

And we also hope that the evaluation will be useful to other people and organisations looking to set up similar projects, so that they can learn from our experiences.

In order to provide information about the project that will be useful to all the people who are interested in the evaluation, and to ensure that we provide all the information that is needed, the evaluation is in two parts: An independent evaluator (called Tia) will look at the project from the “outside”, focusing mostly on how the project has achieved the goals it set out to achieve.

Alongside the independent evaluation, I am undertaking a work-based evaluation to give participants an opportunity to have their say about their experiences of the project.

If you are involved in the Leeds LGBTQ+ Health Inclusion Project, you might well come across Tia and me at some point. We may pop into a workshop you are involved in – this is to see how the workshops run, and to look at what works well, and what might be organised differently. And it is to give people an opportunity to describe their experiences with the project.

A word about what evaluation is NOT:

It is NOT to record details of discussions that are taking place, or to “check up” on anyone involved in the project – and anyone involved in the project with any questions or concerns should feel free to speak to Tia or me, at any time.

Contact details for me, and for Advonet (the organisation hosting the project) are on the next slide)

Slide 7

Thank you for listening to this short film. Please feel free to get in touch about the evaluation, or about the Leeds LGBTQ+ Health Inclusion Project itself.

Thanks so much for checking out this blog – I’d love to hear your thoughts about communicating ideas, research findings, evaluations, anything…