Making Tools to Make Things Strange: The art of understanding Disability Arts from multiple perspectives


By Disability Arts Online and Diane Carr

During 2018 and early 2019 the Disability Arts Online team (consisting of Trish Wheatley, Colin Hambrook and Allan Sutherland) had a series of conversations with Diane Carr, a media and cultural studies researcher based at the Institute of Education at UCL. What follows is several paragraphs of context to the work Disability Arts Online has been engaged in, followed by an edited version of an interview with Diane Carr and some conclusive thoughts on the work ahead.

To read a shortened summary of the key concepts in this article using simplified language please click on this link.

sculpture of the map of Great Britain made out of parts of a manual wheelchair

Great Britain From A Wheelchair (c) Tony Heaton

Conversations had through email and face-to-face, fed into DAO’s continuing work on ‘Electric Bodies’ (part of the D4D project) which was designed to help Disability Arts Online gain a better understanding of the future of Disability Arts, and of who we are as an organisation.

The focus of our collaboration with Diane developed over time. We met and talked about aspects of our disability experience. We talked about identification and affiliation, and what that means to us. We spoke about the divisions and schisms that we see within the Disability Arts community, and the different ways that people describe the Disability Arts movement. We are aware of the arguments about what disability arts is and who it is for. We have been struggling to unravel these issues, while at the same time thinking about how the Disability Arts sector could evolve further, and about what these changes might mean for us as an organisation.

Through these conversations we agreed that Diane’s role would be that of ‘critical friend’. Diane was free to be critical and ask us awkward questions precisely because she is not a member of the Disability Arts community. She doesn’t work as an artist and is not relying on the same networks of curators, or other artists, or depending on the same funders.

During 2018 we were sharing, reading and commenting on a draft of a provocation written by Colin Hambrook and Trish Wheatley titled:  ‘Are we in an Era, Post Disability Art?’ (published in August 2018) – that went back and forth through conversations and email. In the provocation we explored ideas about the history of Disability Arts, and how it is understood by different factions of our community.

These factions often hinge around what it means to present as a disabled person, or as a disabled artist, and what those identities might mean in different contexts. These are questions that can raise all kinds of problems for artists seeking to forward their careers.

At the same time as we (DAO) were writing the provocation, we set up a series of three workshops to initiate some further conversations. Our first group were artists who are very committed to Disability Arts and, who by and large had invested in the sector in varying ways over a long time frame. They welcomed the opportunity to actually sit and talk with each other, because opportunities to get together face to face, are rare.

The second group we wanted to speak with were artists who might define themselves as disabled artists, or might not, depending on the context of the work they are making and the funding opportunities they are going for. For this group there is a sense that disability is one strand of their identity which may or may not influence their work depending on the project. So, for example if they are presenting to a curator they might not identify as a disabled artist because they are looking to work in a mainstream context. If you’re talking about choices, identification and how we choose to present ourselves, it’s important to think about how varied impairment can be, and also about the art form under discussion. A theatre-based person and a visual artist might face a very different set of choices. For these artists, identifying as a disabled artist raises questions about creative autonomy, and about professional practice.

The third group were artists who identified as being in conflict with Disability Arts practice for a range of different and sometimes contradictory reasons. This includes artists who may, for example, see Disability Arts as not radical enough, or who consider that the sector panders too much towards inclusivity and populism. Or, perhaps they simply feel that the label of disabled artist is irrelevant, as it might be for those disabled people who prefer their art to be seen on its own terms, and regard the disability arts label as a hindrance.

There was also common ground. For instance, all the artists who took part in these workshops had an understanding of the social model of disability and to greater or lesser extents would say they were working within the social model. While we were reflecting on these workshops, and writing the provocation, one of the issues that kept coming up was that of  ‘generations’ – the idea of different generations of artists holding different and even contradictory ideas of what constitutes a disability arts practice, because they were drawing on very different experiences of disability. Reading our drafts, reflecting on our conversations, Diane picked up on our references to ‘generations’ and asked if we thought it might be useful for her to explore this idea further.

Generations of artists?

With DAO’s permission, I starting looking at the idea of generations, and its relationship to schism in creative communities. I read some relevant research, and re-visited DAO’s provocation. I arrived at two questions. The first was: Would ‘reflexivity’ help Disability Arts Online get a different perspective on the difficulties they had identified? For researchers, the term ‘reflexivity’ usually involves attempts to ‘make strange’ our own perspective, or to make the familiar, unfamiliar. My second question was: Could the idea of ‘generations’ help support reflexivity?

I was influenced by two research papers in particular. The first was a paper written by Alison Harvey and Stephanie Fisher (the full title of the paper is included in the notes). In it, the authors discuss the importance of reflexivity to their attempts to understand and address the tensions that appeared in a series of game design workshops that they were running. What they found was that some participants held hopes of becoming industry professionals, while others had no such expectation. The problem was that some of the venues used, the mentors taking part, and the peer critique shared by participants tended to validate the former group, while still further marginalizing the latter.

Harvey and Fisher used the term ‘generationalism’ to talk about the idea that these two groups could be identified by their different expectations. So in this context, ‘generation’ is about having a shared perspective, or fitting in a shared category (that then makes you part of an identifiable group) than it is about having a shared age. I thought Harvey and Fisher’s points were relevant to the impasse that DAO had discussed with me, because of the process they had to commit to. They had to ‘make strange’ aspects of their practice, in order to understand the tensions they were seeing. Also, I thought their points about perspective and generation resonated with elements of DAO’s provocation.

Up to that point, I had only been aware of the everyday uses of the term ‘generations’: to talk about people born at a particular time (to be a generation, or to generate something). To help me better understand what it meant in this context, I looked up a paper about the idea of generation and how it has been used in sociology (it was written by S.Perhonen, see the notes for more details). What Perhonen talks about is the idea of ‘generation’ as a way of grouping people. So, when you group by age you’re doing it for a reason. You’re also making that group, by naming it. In the process, you are pulling one part of their identity (their age) into the foreground, and pushing other aspects of their identity into the background.

As an example, think about advertising and how frequently you see ‘baby boomers’ or ‘millennials’ depicted in a particular way. Think about how often the statements being made about a generation (and their values or experience) will depend on glossing over differences of class, gender, ethnicity, sexuality or disability. As this suggests, ‘generation’ involves the forming and naming of groups (grouping). It involves a ‘grouper’ – somebody who bands and brands the group. It involves the group themselves (the grouped). Plus, it involves a relationship: between the grouper (or spokesperson role) and the group that has been formed.

This suggests to me that if community facilitators need to reflect on what they are doing, or get a new perspective on how they do it, then thinking about ‘groups, grouping and grouper’ could raise some useful questions. For instance: Who is doing the grouping, and on what basis? What criteria gets validated, or celebrated, and why? What if other criteria (and other members of the group) are marginalised or discredited in the process?

To sum up so far: Reflexivity involves an effort to make strange our own working practice, while the idea of ‘generationalism’ has the potential to raise a set of difficult questions. These questions would be like tools, to support reflexivity. With these points in mind, I turned back to DAO’s provocation.

In the provocation, DAO review the history of Disability Arts and identify milestones and turning points – changes to institutionalization, education, mainstreaming, and funding. Institutions, schools, and funders all make groups, split groups and position people in different ways.  At the same time, the ‘story of Disability Arts’ shared in the provocation also groups people. When I re-read the provocation with the idea ‘generations’ in mind, it raised questions about grouping, and about the role of grouper, and the kinds of power and authority that might be a part of that role. I thought this was interesting because the purpose of the provocation was to invite responses and debate. Thinking about the role of ‘grouper’ brought me to questions about pronouns (I, we, us, them), and questions about ‘voice’ (who is speaking?), because the provocation played host to several different ‘voices’.

First, there was the ‘I know’ voice, for statements based on first-hand experience. For example, statements like: “I know this” or “I’ve done this”. Secondly, there was the ‘we know’ voice, which was more complicated. Was this ‘we’ as in the Disability Arts community, or ‘we’ as in the authors? Thirdly, there was another kind of voice; a disembodied voice. Instead of ‘I know’ or ‘we know’ it becomes: ‘it is known that’. Suddenly there’s not a person anymore, it’s the voice from nowhere.

I thought these shifts were worth thinking about because it raises questions about who is telling the story, and hence who is doing the grouping. It’s also interesting, I think, because the provocation is intended to provoke (hence the name!) and invite a response – and some of these ‘voices’ are going to be easier to argue with, or respond to, than others. I would find it quite easy to respond to an “I said, I did, I had this experience” kind of voice, because it suggests a discussion with a person. Then, the “we think”, “we see” voice is a bit more ambiguous, so it might be a little bit harder for me to argue with (because it’s less clear who I’m arguing with). The hardest voice to talk back to would be the disembodied voice from nowhere, which is both impersonal and authoritative.

When I used the idea of ‘group, grouper, grouping’ as a lens, and re-read the provocation through that lens (as it were), it showed me something new. It made me look at who was speaking and made me wonder about how easy or difficult it might be to respond. That made me think about authority, and about the kinds of unintentional gatekeeping that could creep in to narratives like this. It also made me think about groups and validation, which raised some follow-on questions about community, professionalism, and about the whole idea of being an artist in Western culture.

Questions raised

The idea of the artist as an individual runs deep in Western cultures. See, for instance, Amelia Jones work on art history where she talks about the emergence of two highly individualistic figures at the same time in Western history, both associated with particular ways of looking and seeing. One of these figures gets associated with the subjective, emotive side of things – and that’s the figure of the artist. Meanwhile, the other takes on the objective ‘voice from nowhere side’ – and that’s the scientist. It’s a voice that’s culturally associated with power and authority. That is why it is significant when it turns up in a history narrative that features ‘grouping’.

The idea of the artist as individual is present in DAO’s provocation in ways that raise further questions about groups and grouping, especially as it relates to validation. In stories of art and art history, being named, being individualized, is usually a mark of success. Which, I think, creates a baffling sort of tangle in the context of a narrative that at the same time recognizes the importance of community. I wondered if there was a conversation to be had about this pull or tension, between the figure of the artist as an individual and the artist as a professional, the according of status by naming (and what it means ‘to make a name for oneself’), and how awkwardly these things might sit alongside commitments to collective action, inclusion and community.

To get back to DAO’s provocation, there are references to shared and definitive experiences; a history of the Disability Arts movement, recognition of the value and need for community, as well as well as recognition of notable (named/individualised) artists. This made me wonder about DAO’s role and the tensions and paradox that could exist between curatorship and community facilitation, professional success, and collective action. This is something that Harvey and Fisher explored in their paper because, as noted, one of the main schisms they found was between the participants who identified with professionalism, and those who felt alienated by these same aspirations.

To connect this back to the points made earlier, the notion of ‘generation’ involves the role of grouper, but also, the relationship between this grouper, and the group. Questions about curatorship and the role of community historian are questions about this relationship. Asking about this relationship takes me back to questions about DAO’s role and especially, what it means to be ‘online’. To what extent does the rise of social media, for instance, pose challenges to this relationship, or a chance to rethink it?

Here’s a snapshot of some of the ‘grouping’ that is done in the provocation: Old school versus new school; mainstream versus non-mainstream institutions; right-on collectives, versus professional, or individualised. Disability audiences versus mainstream audiences. Resisting versus joining. If we think about this stuff in terms of ‘group making’ – if we problematize the idea of grouping – what are the implications?

I’m a deaf person so one of the things that jumps out at me is the implication that affiliation involves choice. After all, the usual way to distinguish between deaf and Deaf identities is to refer to our choice to affiliate with signing communities, or not. Which, I think, is an interesting use of the word ‘choice’. Because it seems to me that it could be a matter of choice. But it might also depend on other things, like where and when we’re born, who our families are, what resources we have (time, money, access), and the local education policies that we encounter. This is another example of groups being made by glossing over such differences, and by selection and naming – those that choose, and that supposedly choose not to. Asking about choice helps to show that narratives about how groups come into being involve forms of grouping, and that grouping involves classification – which is an exceptionally loaded point, given the roles played by assessment and classification within disability experience.

These are the issues that arose for me when I looked at ‘reflexivity’ as a way to re-think and de-familiarize practice, and when I explored the idea of ‘generations’ (groups, grouping, grouper), and tested out its potential to help raise the kinds of difficult questions on which reflexivity might depend.

DAO asked me to be their critical friend, and to ask awkward questions about their role as facilitators, curators and community historians. I’ve done this by raising questions about authority, gate-keeping, validation, and about the role of artist, and the place of ambition. I’ve asked if being online means something different now, thanks to the rise of social media, and if so, what new opportunities there might be to rethink relationships between facilitators and groups. To give credit where it is due, not only did DAO ask me to be critical, they continued talking to me after I shared my work with them in early 2019. DAO welcomed my efforts, embraced my findings, and folded these questions into their ongoing activities for their D4D project Electric Bodies.

DAO and next steps

Disability Arts Online sees that we have important work ahead in continuing to unravel the issues raised by Diane. We have committed to reflecting on our role as ‘grouper’ and gatekeeper, and asking what that means for us as an organisation dedicated to supporting the sector. As this suggests, we have tested out the idea of ‘group, grouper, grouping’ as a tool to help support reflexivity, and have indeed found it useful. It is clearer that our role is not to define disability arts as one thing over another, but rather, to articulate, support and validate the many different facets of disability arts. Some people understand it as one thing, while others see it as something else. Our task is to unpack, understand and support those many different positions. Our role is to say “well, disability arts can be all of those things” – even when this might seem contradictory, because disability and disabled people are diverse and the kinds of relationship that ensue are incredibly complex.

It is challenging, and our work is ongoing, because it raises another set of questions about our role. If we want a varied, evolving and multi-faceted ‘disability arts’ then how do we ‘sell’ it as a product to the rest of the sector and to arts audiences? How do we make sense of it? Do we need to? Is disability arts an internal language that we as a community don’t really need to share? How important is it really that we do or don’t use that definition? How do we promote ‘named’ artists while also celebrating the collective, activist aspects of disability arts; respecting diverse experiences and perspectives, as well as the benefits of community and affiliation?

How much does the ‘grouping’ suggested by the label of ‘disabilty arts’ matter to the community? Is it more important that artwork reflects lived experience? So for example if we think about neurodivergent artists, deaf artists or survivor artists we often find people who do not want their work to be classified as disability arts. For them the term ‘disability’ carries baggage from society with an implied sense of oppression behind it; that despite a social model understanding of the barriers placed by society to prevent equality of opportunity that it still comes back to the idea that disability represents something wrong with the individual, rather than with society.

We see our next step as one in which we invite and open up conversations, to help create frameworks to understand perceptions and viewpoints at a deeper level and to unpack the ownership of grouping, and the relationship between ‘groupers’ and groups – and to ask what this means for us as we continue our goal of working more effectively to discover new models for working with artists.

We want to make space for art that’s got professionalism at its heart underpinned by a rigorous critique, informed and supported by the contexts and conditions that the work is made in. At the same time we also want to embrace art that has community at its heart, and a politicised understanding of what it means to be a disabled person in today’s society.

For more on the idea of ‘making strange’ see this book chapter: Ybema, S. and Kamsteeg, F., 2009. ‘Making the familiar strange: A case for disengaged organizational ethnography’, in Organizational ethnography: Studying the complexities of everyday life, pp.101-19.

S. Purhonen’s paper reviews the idea of generations. ‘Generations on paper: Bourdieu and the critique of ‘generationalism’’ in Social Science Information55(1), pp.94-114, 2016.

The paper on generations and reflexivity by A. Harvey and S. Fisher is called: ‘Growing pains: feminisms and intergenerationality in digital games’, and it’s published in Feminist Media Studies16(4), pp.648-662 (2016)

Summary of key concepts using simplified language

Over the last 3 years Disability Arts Online have been doing lots of work with different groups of artists and university academics, talking about disability arts as an artform. We talked about what brings professional artists and communities to disability arts. We have attempted to understand the varying viewpoints that can sometimes be in opposition. We think it is important to have these conversations in order for disability arts to evolve, change and stay relevant. Below is a summary of the concepts behind understanding Disability Arts from multiple perspectives.

Tools for understanding what Disability Arts Online is thinking about:

Reflexivity – This is about thinking objectively about what we do. To get away from our own familiar way of doing things and to consider the experiences of others.

Generations – Here, generations means having a shared view, or fitting in a shared category (that then makes you part of a group), rather than generations of people born at a particular time.

For example different generations of artists think of Disability Arts in different ways. It can mean:

  • All art made by disabled people.
  • Art about discrimination experienced by disabled people.
  • Art about living with an impairment or long-term health condition.Art that presents specific ideas about life in a disabling world, for good or bad.
  • Art that is therapy.
  • Arts presented accessibly e.g. with sign language or audio description.
  • For some, disability arts is a term that is not useful and can be seen as putting artists into a ghetto or a barrier to getting work commissioned in the wider arts sector.
  • Art that serves a closed community of artists – either you are ‘in’ or you’re ‘out’

We realise that in the act of naming groups we are reinforcing our role as a ‘grouper’ – a gatekeeper that defines what disability arts is and what it isn’t.

We want to have conversations about who else does the grouping? Who are the gatekeepers? Should this change?

We also want to talk with people about how different generations of artists relate to disability arts and to Disability Arts Online as an organisation.

We see the work that we do at Disability Arts Online as bringing people together and connecting people through ideas about art. When we think of generations in this way, it becomes important to think about who groups people together.

We don’t see it as our role to define disability arts as one thing over another. We want to support all aspects of disability arts practice.

Some people understand it as one thing, while others see it as something else. Our task is to find ways to support those many different positions. Our role is to say “well, disability arts can be all of those things” – even when this might seem contradictory. Disability and disabled people are diverse and the kinds of relationships that ensue are incredibly complex.

This work raises another set of questions about our role. If we want a varied ‘disability arts’ then how do we sell it as a product to the rest of the sector and to arts audiences?

How do we make sense of it? Do we need to? Is disability arts an internal term that we as a community don’t really need to share? How important is it really that we do or don’t use that definition?

How do we promote ‘named’ artists while also celebrating the collective, activist aspects of disability arts? How do we respect diverse experiences and perspectives, as well as promoting the benefits of being part of a community? How do we support high quality critique at the same time as supporting grassroots community work?

How much does the ‘grouping’ suggested by the label of ‘disability arts’ matter to the community? Is it more important that artwork reflects lived experience? How do we support the artists who do not want their work to be classified as disability arts?