Disability Data Cultures

paper for Big Data Cultures SymposiumNews & Media Research Centre

University of Canberra 15 Sept 2014

Gerard Goggin @ggogginDept of Media & Communications

University of Sydney

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.

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?

Part 1:disability data technologies

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

politics of disability data

People with disabilities have been controlled, governed, by classification, taxonomy, types of impairment & disability; such classification continues & is profoundly politicale.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

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

‘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

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

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

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

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

Part 2: Disability data technologies

• locative media• wearables – Google Glass• driverless vehicles -

case 1: Locative media

sonic pathfinder (Tony Heyes, Melbourne-based)

‘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/

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.

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

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.

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

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

case 2: wearables

Exchange Telstra blog, 1 May 2014

“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

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.

Case 3: driverless vehicles

‘… 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

‘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

Part 3

Disability, participatory urban & citizen data initiatives

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)

‘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

one example of disability & urban big data cultures - Smart city dreaming

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/

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

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

Participatory urbanism + disabilityWe 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): 73-81See also: K. Thwaites, A. Mathers & I. Simkins, Socially Restorative Urbanism, 2013M. Friedner & J. Osborne, ‘Audit Bodies: Embodied Participation, Disability Universalism, and Accessibility in India’, Antipode, 45, 1, 43-60Moving beyond walkability: On the potential of health geographySocial Science & Medicine, Volume 75, Issue 11, Pages 1925-1932Gavin J. Andrews, Edward Hall, Bethan Evans, Rachel CollsR. Imrie, Disability and the City (2006)B. Gleeson, ‘Disability and the Open City’, Urban Studies, 38, 2, 251-265

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

‘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.

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

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, 2015Katie Ellis, Gerard Goggin & Beth Haller eds., Routledge Companion to Disability and Media, 2016Katie Ellis & Gerard Goggin. Disability and the Media (Palgrave, 2015)