This is a working document – original posted 11th April 2018 / updated 20th April 2018.
First, some context: over the last couple of weeks I’ve been thinking a lot about disability and the performing arts, as I was visiting Montreal on a personal mission to learn about the scene there and share practice. The tone of the visit was set by attending a Cinema Politica screening of Defiant Lives, a film about the history of the disability rights movement, which was followed by discussion with the local community, including activists. It was an eye opener as well to interact with the Critical Disability Studies Working Group, part of the Participatory Media Cluster at Milieux Institute, Concordia University. I found myself engaging with issues around disability and equality rights on an international level for the first time, considering related issues such as gender, and applying these ideas back to the work I do with both with Drake Music and as an independent sound artist/instrument maker. Running parallel to this, I ended up expanding my making skills, discussing accessible spaces, and starting new collaborations through the Education Makers jams.
I’m grateful to have had the opportunity to deliver a workshop on collaboration in accessible music tech development as a result of this dialog, where some of this started to come together (I’m grateful to Owen Chapman for setting this in motion). This was an opportunity to seek critical outsider perspectives on practice that is all too often framed within victory narratives. More of that in a future blog post, but there was one aspect that I came away unsatisfied with that I felt the need to write about here.
I had planned to make the social model of disability a foundation of the workshop and advertised it as such. Learning about this approach through my contact with Drake Music (and in particular a sustained collaboration with John Kelly on the Kellycaster) was a pivotal moment in my work as an educator and musician, and I’d go further to say it has completely changed my worldview. The social model is important because it represents the first significant moment that disabled people reclaimed disability and redefined it according to their own experiences (that’s not to say that every disabled person identifies or agrees with it). It’s about liberation, a move from the dominant imposed models and a move towards a rights-based approach.
In simplified form, the social model sits in opposition to the medical model, in which disability is conflated with impairment, something to be fixed, and responsibility falls upon the individual to fit in. Through the social model, impairments are recognised, but disability is considered the product of society’s failure to accommodate individuals’ rights to equal access; the barriers created by society in various forms.
I find it incredibly difficult to speak about the social model in general terms, whether I’m trying to provide an introduction or realise that I’m preaching to the converted. I confess I have a surface understanding of this area learned mostly through practice. In this case I did my usual cop-out: I played a video (the introduction provided by Scope is excellent, and was one of my own entry points, but doesn’t feel right for this kind of moment), and stumbled through some token references to aesthetics of access pioneered by Graeae.
The problem is that whenever I try to talk about these issues, I keep coming back to language – or rather, getting bogged down in it. Yes, discussing the social model raises important issues around person-first language (and indeed the importance of respecting self-identification on that front). And we can draw a lot of parallels between building automatic doors to benefit everyone and building access into technology. But that’s where I’ve tended to leave the discussion. Maybe it’s because these issues are less directly relevant to me, to my personal lived experience. Maybe it’s because they almost seem too obvious to explore at length, but I’ve come to realise that the translation between contexts isn’t always clear in the way that I assume it is.
My approach to this was partly inspired by something Ann-Louise Davidson (founder of the maker lab at Milieux) said in a recent conversation: that in her line of work, so much dialog across practices is really about translation. I realised that I was missing a more direct way of placing some of these ideas in context, in the language of music-making and instrument development as well as broader access. And that’s when something clicked.
So after some thought, here’s the missing slide, comparing the medical and social models in context. This is by no means exhaustive, and there’s a undoubtedly a bias towards instrumental/performance situations and a hearing, white, cisgender male person’s perspective. So it’s just a start, and requires much further discussion, but I think at least this illustrates some of the current issues in the context of music technology and what we might describe as adapted or accessible instruments.
A rough version of this slide, which I created for a music teacher training session at Trinity Laban, can be found at this link.
Many of these thoughts have come out of conversation with disabled people who are musicians, facilitators, makers, and artists, over the past couple of years (a grouping in which I would sometimes place myself, but I’ll return to that later). In particular I’d like to thank John Kelly and Gift Tshuma (a Montreal-based musician and activist), who I spoke to over Skype and in person respectively within a couple of hours of each other the day before the Milieux workshop. A common thread in these two conversations was the questioning of the frequent use of the term “inspirational”, which I guess we might think of as a remnant of the charity model that was prominent in the 20th century, and the subsequent “superhuman” narrative that developed around the 2012 Paralympics. Not to suggest that disabled people can’t be inspirational in their own right, just like anyone else (or indeed self-identify and own these labels), but these conversations highlighted that this situation is often a barrier to equality. As John put it, “if I inspire people, I hope it’s to challenge the crap that’s out there”.
It was John (alongside Gawain Hewitt, head of Drake Music’s R&D programme) who first introduced me to the social model in this context. I sent the slide to John to ask his opinion, and I’m grateful for a couple of tweaks to the terms I’ve used in the diagram, in particular a focus on rights and equality (any mistakes or misrepresentations remain my own). I also asked John what he thought about the inclusion of “medical” in quotes, since I found myself questioning its relevance in this context. John had this to say – with a disclaimer that this is based on personal experience and needs backing up with evidence:
For me the medical model in music is about …fitting in to assumptions of normality…seeing the purpose/role as being only therapeutic/rehabilitation/self expression…instruments played in one prescriptive way…examination process excluding/devaluing adjustment…a hobby/time filler.
Running through all of this is a question of where I place myself. In certain contexts, I identify as disabled. I’m not sure how constructive it is for me to identify as “partially disabled”, but the barriers I experience might be described as less visible or less commonly recognised than others. From a I received my first ADHD diagnosis shortly before being excluded from secondary education, and another in adult life when I reached breaking point post-PhD, finding that the only way I could work would be to spend long hours making up for lack of focus (or indeed, having hyper-focused on the wrong task). For a long time, I felt unable to pursue work in academia. I still encounter barriers in my interactions as a freelancer with other professionals, to the point of sometimes being pushed out of projects rather than discussing avenues for support. And left to my own devices, I watch myself oversubscribing and drowning in unrealistic commitments and cables, again and again.
It’s complex – the lines on my own responsibilities are often unclear. I have agency in these situations. And if I don’t initiate discussion around these situations somehow, then perhaps I’m not not creating opportunities for the shared responsibility that access often needs in order to work. I reject the “deficiency” part of the ADHD label in the same way I would reject attitudes to diverse body types as deficient – not that these are equivalent issues (for the record, re: ADHD, I prefer the as yet unrecognised terms Attention Regulation Condition or Creative Self Sabotaging Disorder, depending on the circumstances). In line with the social model, for the most part I do not find my immediate environment disabling. As well as having found an appropriate line of work, I recognise a certain amount of priveledge in this. So, asking if I identify as disabled, the answer remains ambiguous. However, learning about the social model has helped me understand this situation.
After posting an early version of this piece, I received this response from a friend and some-time labelmate Richard Wrigglesworth, who records as Tudor Acid:
The main issue I have in this area is that sometimes (in autistic communities, not sure what its like in ADHD communities) there is a tendency to assign success in music to your neurodiversity, where as for me equality REALLY is enough, and I think that the superhuman narrative is a huge pitfall!
This is an important point in terms of my own journey. My creative output is certainly influenced by the way my mind works in interaction with the resources available to me and my social environment. I would like this to be recognised, but not as a determining factor. I suppose this highlights part of the drive for me in attempting to unpick this, and may need to be the subject of a future post.
There’s so much to explore here, and undoubtably this is not new territory for a lot of people, but I hope this can provide a spark for some conversation. I am posting this in rough form in the spirit of openness and sharing ideas, so I hope to follow up soon and would love to hear what other people think of this.