Creating Visible Children?
Authors: Matthews Nicole 
Published: October 2020

I want to argue here that the use of terms like “disabled” has very concrete and practical consequences; such language choices are significant and constitutive, not simply the abstract subject of a theoretical debate or a “politically correct” storm in a teacup. In this paper I want to examine some significant moments of conflict over and resistance to definitions of “disability” in an arts project, “In the Picture”, run by one of the UK’s largest disability charities, Scope. In the words of its webpages, this project “aims to encourage publishers, illustrators and writers to embrace diversity - so that disabled children are included alongside others in illustrations and story lines in books for young readers” (http://www.childreninthepicture.org.uk/aboutus.htm). It sought to raise awareness of “ableism” in the book world and through its webpage, offer practical advice and examples of how to include disabled children in illustrated children’s books. From 2005 to 2007, I tracked the progress of the project’s Stories strand, which sought to generate exemplary inclusive narratives by drawing on the experiences of disabled people and families of disabled children. My research drew on participant observation and interviews, but also creative audience research — a process where, in the words of David Gauntlett, “participants are asked to create media or artistic artefacts themselves.” Consequently, when I’m talking here about definitions of “disability’, I am discussing not just the ways people talk about what the word “disabled” might mean, but also the ways in which such identities might appear in images. These definitions made a real difference to those participating in various parts of the project and the types of inclusive stories they produced. Scope has been subject to substantial critique from the disability movement in the past (Benjamin; Carvel; Shakespeare, "Sweet Charity"). “In the Picture” was part of an attempt to resituate the charity as a campaigning organization (Benjamin; O’Hara), with the campaign’s new slogan “Time to get Equal” appearing prominently at the top of each page of the project’s website. As a consequence the project espoused the social model of disability, with its shift in focus from individual peoples’ bodily differences, towards the exclusionary and unequal society that systematically makes those differences meaningful. This shift in focus generates, some have argued, a performative account of disability as an identity (Sandhal; Breivik). It’s not simply that non-normative embodiment or impairment can be (and often is) acquired later in life, meaning that non-disabled people are perhaps best referred to as TABs — the “temporarily able bodied” (Duncan, Goggin and Newell). More significantly, what counts as a “disabled person” is constituted in particular social, physical and economic environments. Changing that environment can, in essence, create a disabled person, or make a person cease to be dis-abled. I will argue that, within the “In the Picture” project, this radically constructionist vision of disablement often rubbed against more conventional understandings of the term “disabled people”. In the US, the term “people with disabilities” is favoured as a label, because of its “people first” emphasis, as well as its identification of an oppressed minority group (Haller, Dorries and Rahn, 63; Shakespeare, Disability Rights). In contrast, those espousing the social model of disability in the UK tend to use the phrase “disabled people”. This latter term can flag the fact that disability is not something emanating from individuals’ bodily differences, but a social process by which inaccessible environments disable particular people (Oliver, Politics). From this point of view the phrase “people with disabilities” might appear to ascribe the disability to the individual rather than the society — it suggests that it is the people who “have” the disability, not the society which disables. As Helen Meekosha has pointed out, Australian disability studies draws on both US civil rights languages and the social model as understood in the UK. While I’ve chosen to adopt the British turn of phrase here, the broader concept from an Australian point of view, is that the use of particular sets of languages is no simple key to the perspectives adopted by individual speakers. My observations suggest that the key phrase used in the project — “ disabled people” — is one that, we might say, “passes”. To someone informed by the social model it clearly highlights a disabling society. However, it is a phrase that can be used without obvious miscommunication to talk to people who have not been exposed to the social model. Someone who subscribes to a view of “disability” as impairment, as a medical condition belonging to an individual, might readily use the term “disabled people”. The potentially radical implications of this phrase are in some ways hidden, unlike rival terms like “differently abled”, which might be greeted with mockery in some quarters (eg. Purvis; Parris). This “passing” phrase did important work for the “In the Picture” project. As many disability activists have pointed out, “charity” and “concern” for disabled people is a widely espoused value, playing a range of important psychic roles in an ableist society (eg. Longmore; Hevey). All the more evocative is a call to support disabled children, a favoured object of the kinds of telethons and other charitable events which Longmore discusses. In the words of Rosemarie Garland Thomson, the sentimentality often used in charity advertising featuring children “contains disability’s threat in the sympathetic, helpless child for whom the viewer is empowered to act” (Garland Thomson, 63). In calling for publishers to produce picture books which included disabled children, the project had invested in this broad appeal — who could argue against such an agenda? The project has been successful, for example, in recruiting support from many well known children’s authors and illustrators, including Quentin Blake and Dame Jackie Wilson. The phrase “disabled children”, I would argue, smoothed the way for such successes by enabling the project to graft progressive ideas —about the need for adequate representation of a marginalized group — onto existing conceptions of an imagined recipient needing help from an already constituted group of willing givers. So what were the implications of using the phrase “disabled children” for the way the project unfolded? The capacity of this phrase to refer to both a social model account of disability and more conventional understandings had an impact on the recruitment of participants for writing workshops. Participants were solicited via a range of routes. Some were contacted through the charity’s integrated pre-school and the networks of the social workers working beside it. The workshops were also advertised via a local radio show, through events run by the charity for families of disabled people, through a notice in the Disabled Parents site, and announcements on the local disability arts e- newsletter. I am interested in the way that those who heard about the workshops might have been hailed by —or resisted the lure of — those labels “disabled person” or “parent of a disabled child” or at least the meaning of those labels when used by a large disability charity. For example, despite a workshop appearing on the programme of Northwest Disability Arts’ Deaf and Disability Arts Festival, no Deaf participants became involved in the writing workshops. Some politicised Deaf communities frame their identities as an oppressed linguistic minority of sign language users, rather than as disabled people (Corker; Ladd). As such, I would suggest that they are not hailed by the call to “disabled people” with which the project was framed, despite the real absence of children’s books drawing on Deaf culture and its rich tradition of visual communication (Saunders; Conlon and Napier). Most of those who attended were (non-disabled) parents or grandparents of disabled children, rather than disabled people, a fact critiqued by some participants. It’s only possible to speculate about the reasons for this imbalance. Was it the reputation of this charity or charities in general (see Shakespeare, "Sweet Charity") amongst politicised disabled people that discouraged attendance? A shared perspective with those within the British disabled peoples’ movement who emphasise the overwhelming importance of material changes in employment, education, transport rather than change in the realm of “attitudes” (eg Oliver, Politics)? Or was it the association of disabled people undertaking creative activities with a patronising therapeutic agenda (eg Hevey, 26)? The “pulling power” of a term even favoured by the British disability movement, it seems, might be heavily dependent on who was using it. Nonetheless, this term did clearly speak to some people. In conversation it emerged that most of those who attended the workshops either had young family members who were disabled or were imbricated in educational and social welfare networks that identified them as “disabled” — for example, by having access to Disability Living Allowance. While most of the disabled children in participants’ families were in mainstream education, most also had an educational “statement” enabling them to access extra resources, or were a part of early intervention programmes. These social and educational institutions had thus already hailed them as “families of disabled children” and as such they recognised themselves in the project’s invitation. Here we can see the social and institutional shaping of what counts as “disabled children” in action. One participant who came via an unusual route into the workshops provides an interesting reflection of the impact of an address to “disabled people”. This man had heard about the workshop because the local charity he ran had offices adjacent to the venue of one of the workshops. He started talking to the workshop facilitator, and as he said in an interview, became interested because “well … she mentioned that it was about disabilities and I’m interested in people’s disabilities – I want to improve conditions for them obviously”. I probed him about the relationship between his interest and his own experiences as a person with dyslexia. While he taught himself to read in his thirties, he described his reading difficulties as having ongoing impacts on his working life. He responded: first of all it wasn’t because I have dyslexia, it was because I’m interested in improving people’s lives in general. So, I mean particularly people who are disabled need more care than most of us don’t they? …. and I’d always help whenever I can, you know what I mean. And then thinking that I had a disability myself! The dramatic double-take at the end of this comment points to the way this respondent positions himself throughout as outside of the category of “disabled”. This self- identification points towards the stigma often attached to the category “disabled”. It also indicates the way in which this category is, at least in part, socially organised, such that people can be in various circumstances located both inside and outside it. In this writer’s account “people who are disabled” are “them” needing “more care than most of us”. Here, rather than identifying as a disabled person, imagined as a recipient of support, he draws upon the powerful discourses of charity in a way that positions him giving to and supporting others. The project appealed to him as a charity worker and as a campaigner, and indeed a number of other participants (both “disabled” and “non-disabled”) framed themselves in this way, looking to use their writing as a fundraising tool, for example, or as a means of promoting more effective inclusive education. The permeability of the category of “disabled” presented some challenges in the attempt to solicit “disabled peoples’” voices within the project. This was evident when completed stories came to be illustrated by design, illustration and multimedia students at four British universities: Liverpool John Moores University, the University of Wolverhampton, the University of Teeside and the North East Wales Institute. Students attending an initial briefing on the project completed a questionnaire which included an item asking whether they considered themselves to be disabled. While around eight of the eighty respondents answered “yes” to this question, the answers of these students and some others were by no means clear cut. A number of students identified themselves as dyslexic, but contested the idea that this diagnosis meant that they were disabled. One respondent commented along similar lines: “My boyfriend was very upset that the university considers him to be disabled because he is dyslexic”. How can we make sense of these responses? We could note again that the identity of “disabled” is highly stigmatised. Many disabled students believe that they are seen as lazy, demanding excessive resources, or even in the case of some students with non- visible impairments, lying (Kleege; Olney and Brockman). So we could view such responses as identity management work. From this point of view, an indicator of the success of the project in shifting some of the stigma attached to the label of “disabled” might be the fact that at least one of the students participants “came out” as dyslexic to her tutors in the course of her participation in the project. The pattern of answers on questionnaire returns suggests that particular teaching strategies and administrative languages shape how students imagine and describe themselves. Liverpool John Moores University, one of the four art schools participating in the project, had a high profile programme seeking to make dyslexic students aware of the technical and writing support available to them if they could present appropriate medical certification (Lowy). Questionnaires from LJMU included the largest number of respondents identifying themselves as both disabled and dyslexic, and featured no comment on any mismatch between these labels. In the interests of obtaining appropriate academic support and drawing on a view of dyslexia not as a deficit but as a learning style offering significant advantages, it might be argued, students with dyslexia at this institution had been taught to recognise themselves through the label “disabled”. This acknowledgement that people sharing some similar experiences might describe themselves in very different ways depending on their context suggests another way of interpreting some students’ equivocal relationship to labels like “dyslexia” and “disabled”. The university as an environment demanding the production of very formal styles of writing and rapid assimilation of a high volume of written texts, is one where particular learning strategies of people with dyslexia come to be disabling. In many peoples’ day to day lives – and perhaps particularly in the day to day lives of visual artists – less conventional ways of processing written information simply may not be disabling. As such, students’ responses might be seen less as resistance to a stigmatised identity and more an acknowledgement of the contingent nature of disablement. Or perhaps we might understand these student responses as a complex mix of both of these perspectives. Disability studies has pointed to the coexistence of contradictory discourses around disability within popular culture (eg, Garland-Thomson; Haller, Dorries and Rahn). Similarly, the friezes, interactive games, animations, illustrated books and stand-alone images which came out of this arts project sometimes incorporate rival conceptions of disability side by side. A number of narratives, for example, include pairs of characters, one of which embodies conventional narratives of disability (for example, being diagnostically labelled or ‘cured’), while the other articulates alternative accounts (celebrating diversity and enabling environments). Both students and staff reported that participation in the project prompted critical thinking about accessible design and inclusive representation. Some commented in interviews that their work on the project had changed their professional practice in ways they thought might have longer term impact on the visual arts. However, it is clear that in student work, just as in the project itself, alternative conceptions of what “disability” might mean were at play, even as reframing such conceptions are explicitly the aim of the enterprise. Such contradictions point towards the difficulties of easily labelling individual stories or indeed the wider project “progressive” or otherwise. Some illustrated narratives and animations created by students were understood by the project management to embody the definitions of “disabled children” within the project’s ten principles. This work was mounted on the website to serve as exemplars for the publishing industry (http://www.childreninthepicture.org.uk/stories.htm). Such decisions were not unreflective, however. There was a good deal of discussion by students and project management about how to make “disabled children” visible without labelling or pathologising. For example, one of the project’s principles is that “images of disabled children should be used casually or incidentally, so that disabled children are portrayed playing and doing things alongside their non- disabled peers” (see also Bookmark). Illustrator Jane Ray commented wryly in an article on the website on her experience of including disabled characters in a such a casual way in her published work that no-one notices it! (Ray). As I’ve discussed in more detail elsewhere (Matthews, forthcoming), the social model, espoused by the project, with its primary focus on barriers to equality rather than individual impaired bodies, presented some challenges to such aims. While both fairytales and, increasingly, contemporary books for young people, do sometimes engage with violence, marginalisation and social conflict (Saunders), there is a powerful imperative to avoid such themes in books for very young children. In trying to re-narrativise disabled children outside conventional paradigms of “bravery overcoming adversity”, the project may have also pushed writers and illustrators away from engaging with barriers to equality. The project manager commented in an interview: “probably in the purest form the social model would show in stories the barriers facing disabled children, whereas we want to show what barriers have been knocked down and turn it round into a more positive thing”. While a handful of the 23 stories emerging from the writing workshops included narratives around bullying and or barriers to equal access, many of the stories chose to envisage more utopian, integrated environments. If it is barriers to inequality that, at least in part, create “disabled people”, then how is it possible to identify disabled children with little reference to such barriers? The shorthand used by many student illustrators, and frequently too in the “images for inspiration” part of the project’s website, has been the inclusion of enabling technologies. A white cane, a wheelchair or assistive and augmentative communication technologies can be included in an image without making a “special” point of these technologies in the written text. The downside to this shorthand, however, is the way that the presence of these technologies can serve to naturalise the category of “disabled children”. Rather than being seen as a group identity constituted by shared experiences of discrimination and exclusion, the use of such “clues” to which characters “are disabled” might suggest that disabled people are a known group, independent of particular social and environmental settings. Using this arts project as a case study, I have traced here some of the ways people are recognised or recognise themselves as “disabled”. I’ve also suggested that within this project other conceptions of what “disabled” might mean existed in the shadows of the social constructionist account to which it declared its allegiances. Given the critiques of the social model which have emerged within disability studies over the last fifteen years (e.g. Crowe; Shakespeare, Disability Rights), this need not be a damning observation. 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