'Disability Data Cultures' presentation for Deborah Lupton's 'Big Data Cultures' Symposium, U. of Canberra, 15 September 2014

1. Disability Data Cultures
paper for Big Data Cultures Symposium
News & Media Research Centre
University of Canberra 15 Sept 2014
Gerard Goggin @ggoggin
Dept of Media & Communications
University of Sydney

2. disability + tech: everyday life
• Disability is now recognized as a significant part
of social life, identity, and the life course
• Over the past twenty years, digital technology –
especially computers, the Internet, mobile media,
social media, apps, geolocation technologies, and
now, wearable computers, and even technologies
such as driverless cars – have emerged as a
significant part of the mediascape, cultural
infrastructure, social support system, and
personal identity and repertoire of many people
with disabilities.

3. disability + tech:
‘congealed social relations’, ‘society made
durable’ (Latour, 1991)
• New social relations of disability are premised on –– and
increasingly ‘congealed’ in –- forms of digital technology (cf. Goggin &
Newell, Digital Disability, 2003)
e.g. two big Australia national projects where disability and digital technology are
both entangled - National Disability Insurance Scheme (NDIS) & National
Broadband Network (NBN)
e.g. wearable computers – Google Glass - & smart cities – presented as being a
boon for people with disabilities
• there is an emerging research, policy, design, and activist
engagement with disability and digital technology, but as yet
questions of disability and big data have been not so well canvassed
• Critical (digital sociology – after Lupton) questions: what kind of
social relations are being ‘congealed’ with disability & big data?
What kind of society is being ‘assembled’ involving disability & data
technologies? What the politics of disability data cultures?

4. Part 1:
disability data technologies

5. data histories
• we are in process of understanding what ‘big
data’ signifies (e.g. what kind of datum, what
kind of technologies & architectures)
• data has wide range of particular histories
• ways we approach data are related to - &
recapitulate – long genealogies of information
(not least notions of information society)
• In relation to disability (like health), data has
had particular connotations

6. politics of disability data
People with disabilities have been controlled, governed,
by classification, taxonomy, types of impairment &
disability; such classification continues & is profoundly
political
e.g. World Health Organization’s International Classification of Functioning,
Disability and Health (ICF)
Typically data gathered by agencies & data is guided by
these kinds of rationale; whereas other kinds of data
aren’t gathered
Public policy problem is that many issues for people with
disabilities – e.g. use/implications of digital technologies –
lack adequate research/data
See for instance: H. Hahn, ‘The Political Implications of Disability Definitions and Data’, Journal of
Disability Policy Studies, 1993, 4, 2, 41-52

8. ‘Cochlear Implant Telephone Adaptor’,
http://www.telstra.com.au/abouttelstra/commitments/disability-services/
disability-equipment-program/index.htm#tab-Accessories

9. ‘To be eligible for equipment through Telstra's Disabililty
Equipment Program customers must:
• have a disability and be unable to use a standard telephone
handset and
• be a Telstra customer i.e. obtain basic line rental from
Telstra or be an associate of a Telstra customer residing at
the same address (for example, spouse, member of
household or employee) and
• complete an application form (available from the Disability
Enquiry Hotline) and have it signed by an authorised
professional i.e. a Medical Practitioner, Audiologist,
Audiometrist, Ophthalmologist, Optometrist, Occupational
Therapist or Speech Pathologist’
Telstra, ‘Apply for Equipment’,
http://www.telstra.com.au/abouttelstra/commitments/disability-services/
apply-for-equipment/index.htm#who

10. Lack of data on disability &
(data/digital) technology
• lack of research
– base line picture on use & consumption by technology of people with
disabilities is missing
– textured picture of distinctive uses/non-uses of technology (e.g. qualitative,
participatory, ethnographic research) is missing
– dispersed, incomplete picture on role of technology in social & political
participation
- So analyses of digital technology use (Lupton) are needed
Audit of Disability Research in Australia (Centre for Disability Research & Policy, May, 2014) finds
that research on ‘safety and security, transport and communication, housing and the built
environment, social relationships and community and civic participation’ is ‘significantly under-represented
in ‘research base’
• on the upside, much more engagement & voices & perspective of people
with disabilities in public sphere, especially through online means (blogs,
social media) & also engagement in consultation, advocacy, activist,
debate – generation of new kinds of practices, expression, data by users
with disability

11. ABS data on technology?
‘Q22: Does the person ever need someone to help with, or be
with them for, communication activities?
• Issues: This question invites an ambiguous or contradictory
reading – most communication activities involve being with
someone else.
• It also again invites a perverse outcome and is based on a pre-technological
conception of disability support. This question
would mean that a person who is blind and has someone read
them a book would answer yes, while another person who is
blind borrowing an audio book or downloading one over a
specialised device would answer no.’
PWD 2013 submission to ABS on 2016 Census

12. What is the sociotechnical space of
disability inflected big data?
• from a standpoint of a disability critical
history/account of data, what are the
implications/claims of ‘big data’ platforms,
practices & designs?
• E.g. how many health apps have to do with
disability and impairment
• Why/how should new kinds of data
concerning disability be gathered? E.g.
‘equality data’ debates

13. http://www.informationweek
.com/healthcare/patient-tools/
mental-health-tools-from-
office-to-pocket/d/d-id/
1315578

15. Part 2:
Disability data technologies
• locative media
• wearables – Google Glass
• driverless vehicles -

16. case 1: Locative media

17. sonic pathfinder (Tony Heyes,
Melbourne-based)

18. ‘The Sonic Pathfinder is a secondary mobility aid for use
by people with a vision impairment. It is not suitable for
anyone who does not have primary mobility skills. It is
designed for use out-of-doors in conjunction with either a
cane, a guide dog or residual vision. The use of the device
must be taught by a correctly trained Mobility Instructor.’
‘Imagine yourself in an open space some 4 metres (12ft.)
away from a wall. If you were to turn to face the wall and
start walking, suddenly you would hear, in both ears, the
notes of the musical scale descending in order. Each note
represents a distance of approximately 0.3 metres (1ft.)
of travel. If you were to stop when the tonic is reached;
you would be able to reach forward and touch the wall
with the outstretched hand.’
Tony Heyes, ‘The Sonic Pathfinder’, http://www.sonicpathfinder.org/

19. Since being totally blind I feel much more traffic
vulnerable, not so much getting lost or anything,
just getting run over. And I have a secondary
fear of actually causing injury to another
pedestrian when I'm run down. So the mobility
stuff [using an ultrasound sensor] is highly
valued.
-- Tom, a 46 year old Blind man, from Adelaide,
South Australian
Quoted in Deborah Lupton and Wendy Seymour, “Technology, Selfhood and Physical
Disability,” Social Science & Medicine 50 (2000): 1856.

20. A dog is far more suitable than using something like
a mote sensor and a sonic pathfinder, for example,
which are electronic aids that are either hand-held,
or one actually sits on your head, like a head band
with ear plugs and a big thing across the forehead
and stuff … [I]t’s socially frightening to a lot of
people … Whereas, for example, to walk around
with a dog is completely and utterly socially
acceptable. And I think with technologies, the more
obtrusive it is, the more offensive it can become to
some people.
-- Margie, a 24 year old Blind woman
Quoted in Lupton and Seymour, “Technology, Selfhood and Physical Disability”, 2000

21. In the event of service disruption [to public
transportation], the disabled traveller needs
information in an appropriate form about
suitable alternative methods of reaching their
destination … Mobile phones equipped with
cameras can also be used to send visual and
location information to a service centre where
an operator can then guide the user to their
desired destination.
John Gill, “Priorities for Technological Research for Visually Impaired People,” Visual
Impairment Research 7 (2005): 59-61.

22. Google, ‘WalkyTalky’, https://www.google.com.au/accessibility/on-the-go.html

23. Google, ‘Android Explore by Touch’,
https://www.google.com.au/accessibility/on-the-go.html

24. case 2: wearables

25. Exchange
Telstra
blog, 1
May 2014

26. “OK Glass, what’s this?” With four short words, 31-
year-old Kelly Schulz, 97 per cent blind since birth,
is given a glimpse of what’s in front of her. Google’s
head-mounted computer snaps a photo and a reads
a description into her right ear. “It is a male
bathroom”, a computerised voice tells her. Other
times, “it is a $20 note”, “a bottle of skim milk”, or
“a can of BBQ baked beans”. Schulz trialled a
prototype app on Glass for a day, and though she
stresses that the best piece of technology has four
legs, a wet nose and responds to the name Gallia,
she says Glass has massive potential.
“Google Glass and Telstra come to the help of the disabled,” News.com.au, 5 May,
2014

27. Google Glass has the potential to radically
impact the lives of people with disabilities. Will
you partner with us in making Google Glass
more accessible?
-- Indiegogo crowdfunding platform campaign
“Make it Happen! Google Glass for People with Disabilities,” December, 13, 2013,
http://www.indiegogo.com/projects/make-it-happen-google-glass-for-people-with-disabilities.

28. Case 3: driverless vehicles

30. ‘… 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

31. ‘I am a disability campaigner and I am proud to
be disabled. I know my own limits and very few
of them bother me any more. However, the fact
that I can’t drive is the last thing that I have to
accept about my disability … If only I could drive,
my life would be perfect, disability and all.’
Sarah Ismail, ‘The Miracle of Driverless Cars’, Google, 28
September 2012

32. Part 3
Disability, participatory urban & citizen data
initiatives

33. urbanities of big data cultures
much unfolding & work of big data technologies, but
especially their social imaginaries & cultures, has to do
with the urban
(Raises the question of rurality (or non-urban) & big data cultures)
How does disability figure in – or is (tacitly) imagined in
big data cultures urban imaginaries?
for example, smart cities improve accessibility of cities; technology is
salvation for disabled – another licence for technology (cf. health data
gathering rationales critiqued by Arnold & Bonython)
What are the materialities of urbane big data cultures
when it comes to disability?
cf. Herman, Hadlaw, Swiss, eds., Theories of the Mobile Internet: Materialities
and Imaginaries (2015)

34. one example of disability & urban big
data cultures - Smart city dreaming
‘The great news is that IBM (and probably other tech giants) has
moved out of the house and onto the streets with assistive technology.
The company is partnering with a number of cities worldwide to create
Smart Cities. Imagine entire communities in which people with
disabilities can navigate in safety and with confidence. The technology
already exists to make these metropolitan safe havens; it only takes
the will of policy makers and dedicated resources to build the dream’
‘In Salerno, Italy, for example, the city is adapting existing
infrastructure to integrate IBM technology that will enable the blind to
navigate streets, ‘read’ signage and access public resources …
‘Smart cities are yet another step in the right direction, one that
should be taken by municipalities that believe in accessible and
inclusive living.’
Darby Patterson, ‘Adaptive Technology makes a Technology Smart’,
http://www.simplyraydeen.com/authors/116-darby-patterson/349-adaptive-technology-
makes-a-city-smart

36. Using mobile phones they create audio
recordings, videos, text and images that are
immediately published on the Web. Participants
transform these devices into digital
megaphones, amplifying the voices of
individuals and groups who are often
overlooked or misrepresented in the
mainstream media.
Antoni Abad, “Communities + Mobile Phones = Collaborative Visions,”
http://megafone.net/

40. Megafone, MONTRÉAL*in/accessible,2012-2014
http://megafone.net/montreal/*Arseli

41. Megafone, MONTRÉAL*in/accessible,2012-2014 http://megafone.net/montreal/

42. Participatory urbanism + disability
We propose that citizen science methods can engage riders with disabilities
and others in improving public transportation accessibility by documenting
and assessing problems and good solutions throughout the system. This will
empower riders, resulting in a greater understanding of the transportation
system, and improve the feedback loop between rider and provider.
A, Steinfeld, J. Maisel, & Ed. Steinfeld, ‘The Value of Citizen Science to
Promote Transit Accessibility’, Technology & Disability 22, 1-2 (2010): 73-81
See also:
K. Thwaites, A. Mathers & I. Simkins, Socially Restorative Urbanism, 2013
M. Friedner & J. Osborne, ‘Audit Bodies: Embodied Participation, Disability
Universalism, and Accessibility in India’, Antipode, 45, 1, 43-60
Moving beyond walkability: On the potential of health geography
Social Science & Medicine, Volume 75, Issue 11, Pages 1925-1932
Gavin J. Andrews, Edward Hall, Bethan Evans, Rachel Colls
R. Imrie, Disability and the City (2006)
B. Gleeson, ‘Disability and the Open City’, Urban Studies, 38, 2, 251-265

43. Jennifer Gabrys, Citizen Sense, http://www.citizensense.net/

44. ‘driven by the disability rights movement and
fuelled by an understanding of social structures
rather than the individual as the point where
disability has been activated, there have been
attempts to hack cities and streets to
retrospective provide access for people with
disabilities’
Cake, D & Kent, M 2014, ‘Hacking the City: Disability and Access in Cities Made of
Software’ in T. Brabazon (ed.)City Imaging: Regeneration, Renewal, Decay.
Springer, Berlin.

45. conclusion
• what are the social imaginaries of big data cultures?
• How do we conceptualize & understand data - &
computing & computation, code, algorithms – & its
place in media, technology & social life?
• Disability shows us that very specific kinds of things are
the focus of big data technology investments
• also particular kinds of cultures are selected as the
leading edge of big data; some things are valorized &
funded, but obvious not others
• Normatively speaking, the big data moment could be a
boost to the project of disability, human rights and
democracy – but not very much so far

46. references
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)
Rowan Wilken & Gerard Goggin, Locative Media
(Routledge, 2015)
Gerard Goggin & Mark McLelland, eds., Routledge
Companion to Global Internet Histories, 2015
Katie Ellis, Gerard Goggin & Beth Haller eds.,
Routledge Companion to Disability and Media, 2016
Katie Ellis & Gerard Goggin. Disability and the
Media (Palgrave, 2015)