National Disability (Social) Policy & Technologyseminar for Social Policy Research Centre

UNSW, 9 Sept 2014

Gerard Goggin @ggoggin

Dept of Media & Communications

University of Sydney

national disability (social policy) & technology

• Do we have a framework? – some elements of it

• Does it work? – not really

• Do we need one? – yes, at least a ‘good-enough’ social policy for technology framework

• Paper draws on- research my ARC Future Fellow project on Disability,

Digital Technology & Human Rights

- also on work for Aust Council of Learning Academies project on ‘Technologies for Australia’s Future’ (short title)

Technology in social life

• from specialized & assistive technology to mainstream

• from exceptional to ordinary, everyday – tools for living, information, communication, entertainment, relationships, pleasure

• contemporary disability – and society broadly - involves technology; so everyone has a stake in it

• technology itself is about social/power relations –technology can be regarded as ‘congealed social relations’ or ‘society made durable’ (Bruno Latour, 1991); or involvement in technologies of governmentality (e.g. work of Paul Henman)

Technology example: 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

The majority of people want access to the same market-leading devices that the rest of the population use. They want to choose from the same library of apps and participate in the same activities online.

Scott Hollier, “Opinion: Do we still need specialist technology?” Media Access, 13 June, 2013, mediaaccess.org.au

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 shestresses that the best piece of technology has fourlegs, 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.

A number of reports have critically examined current AT service delivery in the light of current human rights and social justice developments, and found it wanting in terms of resource allocation and priority setting and scope of provision. Overall, ‘‘people with various disabilities are unable to access the aids, equipment and technology essential to their daily functioning, and are unable to access the support required to get them out of bed in the morning’’Natasha Layton, ‘Problems, Policies and Politics: making the case for better assistive technology provision in Australia’, Disability and Rehabilitation, 2014

Theory/research problems: everyday technology

• Theories & traditions of social research & social policy have not seen technology as central – Technology neglected in sociology; though starting to catch

up with ‘digital sociology’ turn; tech has thrived in ‘STS’ (science & technology studies) & 4Ss (Society for Social Studies of Science) – but not in mainstream sociology

– scant disability studies work on technology (now starting to emerge, e.g. with work of Jonathon Sterne, Liz Ellcessor, Katie Ellis, Mara Mills; pioneers like Kate Seelman);we lack something like Judy Wajcman’s Feminist Confronts Technology (1991); classic disability & technology work centres in rehabilitation sciences, engineering, medicine, health sciences, professions; little work on disability in communication, cultural & media studies (emerging here too)

Policy problems: everyday techology

• In social policy, technology has been seen as specialized topic – matches the dominance of ‘assistive technology’ industry & paradigm as approach to disability and technology

• Tech emerges in mainstream social policy 1990s with importance of telecommunications affordability and accessibility, then Internet ‘disability digital divide’ -see Paul T. Jaeger, Disability and the Internet: Confronting a Digital Divide (2012)

• This has altered dramatically – tech now pivoitaltopic in social policy

Policy problems: assistive tech part of solution but not whole framework

‘Recent developments in Australia illustrates that new human rights legislation has successfully changed conditions into problems and has shifted discourse to whole of life outcomes and entitlement, thus broadening and legitimating the role of AT beyond independence and function’With NDIS as ‘policy window’:‘The task now is to inform the enactment of this major policy framework with the expertise of the AT sector, including perspectives of consumers; AT Practitioners; and the AT supply industry. This task was commenced by the peak body for AT in Australia, the Australian Rehabilitation and Assistive Technology Association (ARATA)’ Layton, ‘Problems, Policies & Politics’, p. 4

The National Disability Insurance Scheme is notdesigned to provide direct support for allAustralians with a disability … The NDIS will aimto provide an entitlement for aids, equipment, personal attendant care and other non-incomesupports to around 460,000 Australians withsignificant non-age related disabilities. Theobjective of the NDIS is to address the chronicunmet need of a group of people who havebeen under-supported for decades.

Senator Mitch Fifield, Assistant Minister for Social Services, National PressClub Address, November 2013

Policy problems: everyday technology

• In public policy, economic approaches have dominated, e.g. productivity approach to technology, seen in Productivity Commission seminal report Disability Care and Support (2011), which shaped NDIS

‘Many tasks performed by carers cannot be easily substituted with aids and appliances, and so the scope for dramatic increases in productivity from more intensive use of capital and technological innovation cannot be expected over the short term. In a report entitled ‘How many wheelchairs can you push at once?’, Allen Consulting (2008, p. v) argued that there was poor scope for short-run productivity improvement in Victorian social services … ‘

Productivity Commission, Disability Care and Support (2011, vol. 2, pp. 730)

The wheelchair example oversimplifies the scope for productivity gains over the longer run. The history of the wheelchair illustrates the progress of technology for people with a disability. Prior to the Second World War people with a disability only could get heavy manual wheelchairs, which would often have required the aid of a support person. However, with the invention of the motorisedwheelchair during WWII … people have had access to increasingly sophisticated and lighter wheelchairs over which they have complete control. Productivity Commission, Disability Care and Support (2011, vol. 2, pp. 730)

‘Equally, modification of motor vehicles and driver training has allowed some people with a disability to be mobile without having to use specialist disability transport services. Moreover, increased mobility can enhance labour market and social participation …’

Productivity Commission, Disability Care and Support (2011, vol. 2, pp. 730)

‘some forms of assistive technology that improve quality of life, productivity and participation already exist, but their adoption is limited through rationing, which should be relieved significantly with the establishment of the NDIS’

‘the greater scope for competitive pressures under the NDIS will tend to shift people from less productive agencies to more productive’

‘after their initial introduction, manufactured aids and appliances tend to decrease in price over time, encouraging their wider adoption. This process may be enhanced by bulk purchasing or other procurement strategies used by the NDIA or DSOs’Productivity Commission, Disability Care and Support (2011, vol. 2, pp. 730)

‘innovation will come from people with a disability as users of generic technologies’

‘Technological aids will also make it easier for a broader range of workers to support people with a disability’

‘The Commission has recommended the creation of an “innovation fund” for service providers to encourage productivity in the disability sector’

Productivity Commission, Disability Care and Support (2011, vol. 2, pp. 730, 733)

economic-influenced public policy on disability & tech

• good recommendations from Productivity Commission 2011 report, influencing & being implemented in NDIS/NDIA processes

problems: everyday 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

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

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

Productivity Commission on tech research priorities

Participants’ views: area for research• Innovation in assistive technology, particularly, computer-based

technology …• The benefits of assistive technology for older people and people

with disabilitiesParticular areas that the Commission considers should be a priority for research• relate to capacity building of the community, NDIS participants and

providers; the• use of technology; employment and social participation; and early

intervention

Productivity Commission, Disability Care and Support (2011, vol. 2, pp. 586-587 )

Problems: everyday technology

• Access to tech– reasons to suggest access remains major problem– meanings of access need to be thought about/discussed in their complexity, especially when it comes to design

• Accessibility of tech– bound up with access; also a major, ongoing problem– e.g. web accessibility is perhaps the best known area of effort & policy (e.g. National Transition Strategy) – yet many govt & private websites remain inaccessible; and mobile web/device accessibility of websites is still not a major goal– a key issue is the proliferation of technology, devices, software, etc; this implies that accessible interfaces are crucial, as a translation zone between technology (e.g. accessible operating systems like the Apple OS on its computers, smartphones, and tablets)

Problems: everyday technology

• Disability still an ‘add-on’ in much technology; inclusive design approaches still have a long way to go

• the technology market has been remarkable, but the ‘business’ of technology for disability often lacks (perceived) profitability

• Business cultures still often lack in understanding opportunity for disability innovation

social policy framework for (disability) technology

• actually, it would be good to have a general social policy framework for technology

• In lieu of this, disability is excellent case study/leading edge of what it would look like

Report of Audit of Disability Research in Australia (Centre for Disability Research and Policy, University of Sydney, May 2014

disability tech policy framework: current elements

• National Disability Insurance Scheme (NDIS) –responsibility: NDIA, Minister for Social Services

• National Broadband Network (NBN, such as it is): responsibility: NBN Board, Minister for Communications

Cf. Robert Morsillo, One Down, Two to Go: Public Policy in Service of an Available, Affordable and Accessible NBN for People with Disabilities, Telecommunications Journal of Australia, 61.2 (2011)

• Web accessibility (National Transitional Strategy) responsibility: AGIMO (Aust Govt Info Management Office, Dept of Finance)

• Telecommunications affordability (phones really, & bit of mobiles & internet): responsibility: Telstra, industry; Minister for Communication

Cf. Justine Humphreys, Homeless and Connected 2014 report – on homeless people with disabilities & mobile Internet tech

disability tech policy framework: current elements

• Assistive technology – responsibility: state governments, Fed govt, NDIS/NDIA

• Standards setting - responsibility: various, Standards Australia

• Procurement policies on accessible technology –responsibility: Federal & state govts setting framework

Wayne Hawkins, ‘Australia’s Missing Accessible Information and Communications Technology Procurement Policy’, Telecommunications Journal of Australia, 2011, William Tibben & Gunela Astbrink, Accessible Communications: Tapping the Potential in Public ICT Procurement Policy, 2013 report

• Technology in education – responsibility: providers, education depts, Human Rights Commission

• Technology in workplace – responsibility: providers, industry associations, HRC

disability tech policy framework: current elements

• Community informatics, technology in civil society –responsibility: NGOs, peak bodies, limited govt & private funding

• Statistics & research – little systematic & publicly available responsibility: Australian Institute of Health and Welfare; agencies (esp. now NDIS); regulators (e.g. ACMA – Aust Communications & Media Authority); NGOs providing much (e.g. ACCAN – AustCommunications Consumer Action Network, Media Access) also industry associations

• Social media platforms – responsibility: social media companies such as Facebook, Twitter, Google

Disability tech policy framework

• Innovation policy

-- is existing national policy adequate?

- What are specific disability aspects to innovative? (e.g. case of Google Glass) – what can economic incentives to innovative with disability & technology, esp. for social policy purposes?

Disability tech policy framework

• The disability design turn – design as cross-cutting area of focus for disability, justice, participation – doing diversity differently

– Graham Pullin, Disability Meets Design (MIT, 2009)

– Jos Boys, Doing Disability Differently (Routledge, 2014)

– Catherine Bridge (UNSW)’s work

Ideal elements of social policy framework for disability & technology• Comprehensive and articulated across major

policy areas & life domains for technology– UN CRPD good starting point

• Cross-referenced against, articulated via, social policy objectives

• Proper research base and statistics on technology & disability

• Support for inclusive design approaches• Important of co-design, participatory design,

users involvement in design

references

Katie Ellis, Gerard Goggin & Beth Haller eds., RoutledgeCompanion to Disability and Media, 2016Katie Ellis and Gerard Goggin. ‘Disability, Locative Media, and Complex Ubiquity.’ In Ubiquitous Computing, Complexity and Culture, edited by Ulrik Ekman et al (Routledge, 2015)

Katie Ellis & Gerard Goggin. Disability and the Media (Palgrave, 2015)

Gerard Goggin. ‘Disability, Digital Technology, and Communication Rights: Another Legacy of the World Summit on the Information Society (WSIS)?’, forthcoming

Gerard Goggin, ‘Disability and Mobile Internet’, forthcoming

Gerard Goggin. ‘Innovation & Disability.’ M/C: Media and Culture 11.3 (2008)

Gerard Goggin and Christopher Newell. ‘The Business of Digital Disability.’ The Information Society 24.2 (2007): 159-168.