Post on 16-Apr-2017
Communication, Media & Disability: New Models of Social
Action & Political Imagination
Gerard Goggin @ggogginDept of Media & Communications
University of SydneyWorkshop for
PWD Professional Development Friday 6 May 2016
Ubiquitous media• Comms & media is central to most organizations, esp. policy &
advocacy organizations – at the cutting edge of social change & justice
• Media has moved well beyond being the ‘specialized’ responsibility or expertise of the ‘Communication & Media Officer’ (fabulous though she is), or ‘spokesperson’
• To some extent, now, it is something that is a concern of most staff, board & members of organization
• Also: the line between ‘internal’ and ‘external’ communications has been re-drawn – not least with ideas & platforms supporting much more ‘open’ access to information (e.g. the website)
Deep underpinnings & potential of communication & media
• as well as undoubted importance of media skills, strategies, expertise, and training across an organization, there are much wider & deeper implications of media & communication
• Not least because, to achieve a just & accessible society, we need to change material structures, power arrangements & ideas – and communication is key to this
Communication is central to human, social life, and environment
Communication spans a wide range of ways of relating, meaning making & social practices: face-to-face; communication at a distance; ‘mass’ communication; mediated communication; digital communication
Communication underpins many aspects of disability justice, rights, and equality that DPOs & disability communities see as vital:
Civil rights - Freedom of thought & expressionSocial rights – economic & social welfare, connection & well-beingPolitical rights – democratic participationCultural participation & rights -
Especially with digital transformations of past 2 decades, communication & media have moved beyond narrow (& often exclusionary) ’traditional’ media – press, radio & TV, magazines
The Internet & especially social media allow ‘anyone’ to ‘broadcast yourself’ (YouTube)
Social media allow crossover between ‘intimate media’ & ‘intimate citizenship’ (‘private life’) & ‘public’ life & other kinds of citizenship
Media industries have dramatically changed
Many middle to large organizations now are media organizations! e.g. sporting organizations have their own TV channel
Digital media are now involved in:
• new models of governance, policy processes (e.g. ‘Mindhive’) & advocacy
• Service delivery – e.g. NDIS; ‘digital-first’ government services (Turnbull govt Digital Transformations Office)
• Design of environments: smart homes; smart cities
• Transportation: ’sharing economy’; ‘driverless cars’
‘It is difficult to conceive then, in its current trajectory, that Australia’s Digital Transformations Office will contribute much to gender equality and empowerment. A commitment to these objectives is not built into the shaping of Australia’s information policy, let alone its proposals for online government service design or delivery. Specific DTO guidelines at least consider the needs of the linguistically and ethnically diverse and those with disabilities (a legacy perhaps of Australia’s historic cultural diversity policies) but gender is absent.’
Fiona Martin & Gerard Goggin, ‘Digital Transformations?: Gendering the End User in Digital Government Policy’, Journal of Information Policy, forthcoming
‘This does not bode well for the capacity of such initiatives to respond to the intersectional concerns of high need, multiservice women users — such as elderly migrants seeking aged care services for frail and ill partners, or regionally based teenage girls with a disability.’
‘the worldwide move to digital government … is an unprecedented opening for reform of public services design and delivery, potentially promising to pay serious attention to the socio-cultural contexts of user experience not yet well incorporated into strategy and planning, such as disability. However intersectional awareness — if it successfully is addressed — will only work if it takes gender and its complexities seriously.’
Fiona Martin & Gerard Goggin, ‘Digital Transformations?: Gendering the End User in Digital Government Policy’, Journal of Information Policy, forthcoming
How we envision society – our ideals of democracy, justice, equality, participation, respect, and so on - also require accompanying models of communication
‘Our VisionWe have a vision of a socially just, accessible, and inclusive community, in which the human rights, citizenship, contribution, potential and diversity of all people with disability are recognised, respected and celebrated.Our PurposeOur purpose as a leading disability rights, advocacy and representative organisation of and for all people with disability, is to strive for the realisation of our vision of a socially just, accessible and inclusive community.’ - PWDA
as yet, communication rarely includes the diversity, styles, and requirements that are evident if we take an affirmative, rather than ‘deficit’ model of disability
e.g. what is often termed ‘augmentative or alternative communication’ (e.g. not normal) can be seen, rather, as part of the genuine diversity & variation that is communicatione.g. what was seen as a defect, or impairment, deafness, requiring correction (oralism) is now recognized as a rich culture & communication repertoire - sign language
‘Julia Rems-Smario: A Deaf Woman's Journey From Oralism to ASL -- See Her Success Today’, 15 May 2015, YouTube
Thinking with disability, we need to reimagine communication - and claim new kinds of communications rights
Which is what the UN Convention on Rights of Persons with Disabilities doesGerard Goggin. ‘Communication Rights and Disability Online: Policy and Technology after the World Summit on the Information Society (WSIS),’ Information, Communication & Society 18.3 (2015): 327-341.
media plays a double role:1. It is how most of us ‘learn’ about
disability – how attitudes are shaped – ‘disabling images’
2. but media also offer different cultural platforms and social models for how we might re-imagine society.
Therefore media are
1. Central to social justice struggles, including disability transformations
2. Media themselves are a site for struggle (as powerful resources & institutions that are deeply unequal)
‘Game of Thrones is an example the recent diversification of television content. This diversification has pioneered a new type of storytelling … Like a number of programmes featuring in this new televisual arena, Game of Thrones features characters with disability and develops them as complex people with strengths and weaknesses.’
Katie Ellis, ‘Cripples, Bastards and Broken Things: Disability in Game of Thrones’, 2014
‘While characters with disabilities hold central narrative positions and enact disability critiques by claiming their illegitimate status in Game of Thrones, audience members with disability are still subject to "enforced systems of exclusion and oppression" via inaccessibility such as a lack of captions.’
Katie Ellis, ‘Cripples, Bastards and Broken Things: Disability in Game of Thrones’, 2014
media (including new media) has as significant issues with disability as it does with other, interlinked issues of indigeneity, race, gender, sex, class, age - media won’t cover many disability stories& disability critiques of media ableism are very much a minority affair (‘why don’t you put that on the disability activism page’? - #JointDestroyer saga #criparmy @katharineannear )
Where are people with disabilities in media?
- Still very under-represented as media professionals, media producers, media workers
- Hence media content & representations of disability remain deeply flawed
Yes, digital media offers new channels, possibilities for making & circulating media- So people with disabilities have more opportunity for
expression (‘voice’ – many caveats), but who takes notice (‘listens’)
- Where are media careers?- Why aren’t media makers/producers/journalists with disability
getting mainstream or other media gigs?
• slow progress of media reform when it comes to disability hampers change in attitudes towards & understanding of disability;
• This is a problem for all of us, especially those working directly in advocacy & policy & politics – & social change – such as DPOs;
• We are engaged in telling ‘different stories’ about disability, telling our stories of disability & society – to ‘correct the public record’, ‘get the message across’ – because public & political understanding of disability is lacking (at best a work in progress)
What do we represent, when we represent ‘disability’?
(& what else do we need to do, beside & after, representation?)
More and more people now believe that disabled bodies should not be labeled as defective, although we have a long way to go, but we have not even begun to think about how these bodies might represent their interests in the public sphere for the simple reason that our theories of representation do not take account of them.
Tobin Siebers, “Disability in Theory: From Social Constructionism to the New Realism of the Body,” American Literary History, 13. 4 (2001): 742.
… many situations in which the disabled are made invisible, particularly institutionalizations, are clearly the result of the ways in which social resources are allocated and social relations are organized … invisibility is a function of the ways in which treatment of the disabled is structured …
Nancy J. Hirschmann, “Invisible Disability: Seeing, Being, Power,” in Nancy J. Hirschmann and Beth Linker (eds.), Civil Disabilities: Citizenship, Membership, and Belonging (Philadelphia: University of Pennsylvania Press, 2015), 212
Assuming that a body is disabled without knowing what impairment(s) that body has would yield a different way of thinking … Recognition of the temporality of ability, the uncertainty of ability, and the undecidability of the body is vital to the full inclusion of disabled individuals in the body politic.
Hirschmann, “Invisible Disability,” 222.
‘O brave new world, that has such people in’t!’, Miranda, The Tempest
Nicola Miles-Wildin as Miranda, London Paralympics Opening Ceremony, 2012
Communication & media matter in disability & social futures … but these are also framed by narrow assumptionse.g. social media is lauded for its role in information, political & social participation; but most platforms are commercially owned - which at times poses significant issues& the ‘social imaginaries’ of new media are often very neoliberal (e.g. ‘sharing’ = Uber) & don’t include disability or do, on narrow groundsEg. myth that technology will be the salvation of disability
Digital Transformations
Digital Service StandardThe Digital Service Standard establishes the criteria that Australian Government digital services must meet to ensure our services are simpler, faster and easier to use.
10. Ensure the service is accessible to all users regardless of their abilities and environment
Disability & media activism case study
disability activism is one of the most interesting, and perhaps least appreciated, areas of political, social, and cultural innovation when it comes to digital technologyemerging trends, issues, challenges, and possibilities internationally arising from disability activism as it unfolds in the dynamic area of mobile and social mediaesp. interesting dynamics of disability & digital media as cosmopolitan forms of activism & citizenship cf. disability’s fraught relationship with nation state (increasingly tense under neoliberalism)
‘whilst not negating the role of more traditional protest and the need for a plurality of tactics to be used in combination with one another, the role of digital activism is now embedded in disability protest culture and set to play a crucial role in future disability politics more generally.’
Charlotte Pearson & Filippo Trevisan, ‘Disability Activism in the New Media Ecology: Campaigning Strategies in the Digital Era’, Disability & Society (2015), p, 937
Source: Violeta Blue Ayalay Facebook post
Activism on/for digital technology‘… disability activists experimenting with uses of digital technologies, and availing themselves of the ‘democratic affordances’ they offer … Yet the very fact of the use of digital technologies by people with disabilities opens up another contradictory area to do with the technologies themselves and the philosophies and values inscribed in, and affiliated with, them.’ (Ellis, Goggin & Kent, ‘Disability’s Digital Frictions’)
disability activism in UK welfare reforms – ‘disability benefit scroungers’
Disabled people have taken social media and made it into their own medium, where they can have a voice on equal terms with their non-disabled counterparts, something not often afforded by society as a whole…The computer provides a freedom for those with disabilities, it is much easier to protest online than in the centre of London when the Tube is not accessible (quoted in: Ryan, 2014).
Many of us wouldn’t be able to campaign at all without social media … I barely get out of the house, and I’ve given up going into London at all, it’s just too exhausting with my pain-based disability. No matter how many marches on parliament are called, I’m physically excluded by the realities of disability, and that’s true for so many disabled people. Social media lets me campaign while lying flat on my back if I can’t sit up, never mind march on parliament (quoted in: Ryan, 2014).
For about 30 years, I’ve been aware that I operate in two starkly different modes … One is public, where I try and come across as energetic and animated and engaged and good at what I do. It’s a way of being that’s approved of socially. But what people don’t see is the other side, where I spend most of my time at home, a great deal of it lying down in my bed. That’s in order to prepare for the public thing, and to recover from it. I’ve always kept that hidden because it feels dangerous to make it public. It feels like I’d be misinterpreted and people won’t see me as the whole person that I am (quoted in: Adewunni, 2013).
‘tendency for online media – especially social networking platforms – to blur the distinction between ‘private’ and ‘public’ … and the need for innovative campaigning groups to also become visible in traditional media debates in order to be able to foster concrete policy change’
Pearson & Filippo Trevisan, ‘Disability Activism in the New Media Ecology: Campaigning Strategies in the Digital Era’, Disability & Society (2015), p, 937
‘[[in UK Disabled People Against Cuts/DPAC 2012 campaign] emergence of personal stories of disability discrimination as both online campaign tools and newsworthy material contributes to the politicisation of the private sphere in a way that promotes a more ‘inclusive’ form of citizenship (Lister 2007) for disabled people’
Pearson & Filippo Trevisan, ‘Disability Activism in the New Media Ecology: Campaigning Strategies in the Digital Era’, Disability & Society (2015), p, 937
Recent Australia cases ofdisability activism & social media
Closure of ABC Ramp Up disability blog
TEDx Sydney 2015 & #stellaschallenge
#JointDestroyer -
Nov 2015 Destroy the Joint controversy
‘Facebook and Twitter in these protests were often part of the now typically cross-referenced (and to some extent commercially integrated) ecology of convergent, online, social, mobile, and locative media technologies and applications—including YouTube, Vimeo, Pinterest, Flickr and Instagram’‘… widespread availability of mobile digital devices such as smart phones and tablets that allow for the rapid dissemination of these platforms to people both involved in protests but also to others in a timely fashion’ (Ellis, Goggin & Kent, ‘Disability’s Digital Frictions’)
How do we create new models of communication with disability & diversity at their heart, in a ’post-Ramp-up’, NDIS, social media intensive landscape?
Disability, tech & design case study – the ‘disability innovation’ moment?
Exchange Telstra blog, 1 May 2014
‘… it was the words of Google co-founder Sergey Brin that most interested me. He said that driverless cars would provide transport to people who can’t drive themselves, such as blind people or those who are physically disabled.’
Sarah Ismail, ‘The Miracle of Driverless Cars’, Google, 28 September 2012
“micro-affordances of disability”“non-normative ways of moving, sensing, and being in the everyday … potentially transformative actions in the world”“disabled individuals … are forced to seek new niches to occupy and create new affordances within which their corporeal difference would be accommodated”
Arseli Dokumaci, “Micro-Activist Affordances of Disability: Transformative Potential of Participation”, in Mathias Denecke, Anne Ganzert, Isabell Otto, and Robert Stock (eds.), ReClaiming Participation: Technology, Mediation, Collectivity (Bielefeld: Transcript, 2016), 80.
‘Muscular dystrophy robot-building twins enable themselves through 3D printing technology’, 20 April, 2014, 774 ABC Melbourne
referencesMeryl Alper, Elizabeth Ellcessor, Katie Ellis, and Gerard Goggin. ‘Reimagining the Good Life With Disability: Communication, New Technology, and Humane Connections.’ In Communication and the “Good Life”, edited by Helen (Hua) Wang, 197-212. New York: Peter Lang, 2015, http://hdl.handle.net/2123/13268
Katie Ellis and Gerard Goggin. ‘Disability, Locative Media, and Complex Ubiquity.’ In Ubiquitous Computing, Complexity and Culture, edited by Ulrik Ekman et al (Routledge, 2015), http://hdl.handle.net/2123/13129
Katie Ellis & Gerard Goggin. Disability and the Media (Palgrave, 2015)
Katie Ellis and Gerard Goggin. ‘Disability Media Participation: Obstacles, Opportunities, and Politics’, Media International Australia 154 (March 2015): 78-88.Gerard Goggin. ‘Communication Rights and Disability Online: Policy and Technology after the World Summit on the Information Society (WSIS),’ Information, Communication & Society 18.3 (2015): 327-341. DOI: 10.1080/1369118X.2014.989879. Gerard Goggin and Dinesh Wadiwel. ‘Disability, the Australian NDIS, and Political Participation.’ Australian Review of Public Affairs, 13 (2014), http://www.australianreview.net/digest/2014/09/goggin_wadiwel.html
referencesFiona Martin & Gerard Goggin, ‘Digital Transformations?: Gendering the End User in Digital Government Policy’, Journal of Information Policy, forthcoming
Gerard Goggin. ‘Formatting Disability in Contemporary Variety TV: Experiments with Masculinity in The Last Leg.’ In Anthology of Disability and Masculinities, edited by Cassandra Loeser and Vicki Crowley. Basingstoke, UK: Palgrave, 2016. In press.
Gerard Goggin, and Brett Hutchins. ‘Media and the Paralympics: Progress, Visibility and Paradox.’ In Managing the Paralympic Games, edited by Daryl Adair, Stephen Frawley, and Simon Darcy. London: Palgrave Macmillan, 2016. In press.