workshop for PWDA, Sydney, 6 May 2016

1. Communication, Media &
Disability: New Models of Social
Action & Political Imagination
Gerard Goggin @ggoggin
Dept of Media & Communications
University of Sydney
Workshop for
PWD Professional Development
Friday 6 May 2016

3. 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)

4. 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

5. 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

6. Communication underpins many aspects of
disability justice, rights, and equality that DPOs
& disability communities see as vital:
Civil rights - Freedom of thought & expression
Social rights – economic & social welfare,
connection & well-being
Political rights – democratic participation
Cultural participation & rights -

7. 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

9. 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’

10. ‘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

11. ‘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

12. How we envision society – our ideals of
democracy, justice, equality, participation,
respect, and so on - also require accompanying
models of communication

13. ‘Our Vision
We 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 Purpose
Our 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

14. 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 communication
e.g. what was seen as a defect, or impairment,
deafness, requiring correction (oralism) is now
recognized as a rich culture & communication
repertoire - sign language

15. ‘Julia Rems-Smario: A Deaf Woman's Journey From Oralism to ASL -- See Her Success
Today’, 15 May 2015, YouTube

17. 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 does
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.

18. 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.

19. 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)

26. ‘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

27. ‘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

29. 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 )

30. 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?

31. • 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)

32. What do we represent, when we
represent ‘disability’?
(& what else do we need to do,
beside & after, representation?)

33. 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.

34. … 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

35. 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.

39. ‘O brave new world, that has such people in’t!’,
Miranda, The Tempest
Nicola Miles-Wildin
as Miranda, London
Paralympics Opening
Ceremony, 2012

47. Communication & media matter in disability & social
futures … but these are also framed by narrow
assumptions
e.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 grounds
Eg. myth that technology will be the salvation of
disability

50. Digital Transformations
Digital Service Standard
The 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

51. Disability & media activism
case study

52. disability activism is one of the most interesting,
and perhaps least appreciated, areas of political,
social, and cultural innovation when it comes to
digital technology
emerging trends, issues, challenges, and
possibilities internationally arising from disability
activism as it unfolds in the dynamic area of mobile
and social media
esp. interesting dynamics of disability & digital
media as cosmopolitan forms of activism &
citizenship cf. disability’s fraught relationship with
nation state (increasingly tense under
neoliberalism)

53. ‘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

54. Source: Violeta Blue
Ayalay Facebook post

62. 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’)

65. disability activism in UK
welfare reforms –
‘disability benefit scroungers’

70. 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).

71. 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).

73. 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).

74. ‘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

75. ‘[[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

76. Recent Australia cases of
disability activism & social media

77. Closure of ABC
Ramp Up disability blog

81. TEDx Sydney 2015 & #stellaschallenge

86. #JointDestroyer -
Nov 2015 Destroy the Joint controversy

92. ‘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’)

93. How do we create new models of
communication with disability & diversity at
their heart, in a ’post-Ramp-up’, NDIS, social
media intensive landscape?

100. Disability, tech & design case
study – the ‘disability innovation’
moment?

108. Exchange
Telstra
blog, 1
May 2014

110. ‘… 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

113. “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.

115. ‘Muscular dystrophy robot-building twins enable themselves through
3D printing technology’, 20 April, 2014, 774 ABC Melbourne

118. references
Meryl 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

119. references
Fiona 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.