Professor Jane Seale gave an inaugural lecture discussing her research on digital inclusion and exclusion of marginalized learners, using people with learning disabilities as a lens. Her research has examined how access, use, empowerment and participation relate to digital inclusion/exclusion. Through analyzing personal home pages of people with learning disabilities and conducting inclusive research, she has illuminated how perceptions of technology, disability, risk, and resilience can maintain digital exclusion or inclusion. Her work suggests digital inclusion requires presumed competence, negotiated decision-making, and creative approaches to risk.

1. In search of a framework for understanding the processes that maintain digital exclusion Professor Jane Seale, Faculty of Education, University of Plymouth Inaugural Lecture,8th June 2011

2. Overview In spite of the large amount of resources that have been allocated to national and local digital inclusion projects, the underlying social structures and processes that work to maintain the exclusion of marginalised learners continue to exist. I will use examples from my own research with people with learning disabilities as a lens to examine ways in which method and theory can usefully illuminate the structures and processes that influence digital inclusion/exclusion

3. Setting the scene

4. What is Digital Inclusion? Typical definition often applied by government agencies and policy makers: Allmembers of society are able to access the affordances offered by technology use Technology is central to everything we do, and therefore central to our inclusion in society Addressing inequalities, where those unable to access the affordances of technology use are disadvantaged, marginalised Digitally excluded

5. Scoping a DI conceptual framework Access To technology and related services Use Being able to use (e.g. digital literacies) Nature of use: gradations of use Quality of use, “best” use ,“smart use”, “meaningful use” Empowerment Independent and self-sufficient (on whose terms?) Exerting control and choice over use Participation Civic engagement through to participation in education Passive participation through to active participation (having an influence in the way technologies are used) Simple Tangible Complex Less Tangible

6. Why does scoping a conceptual framework matter? Access To encourage us to focus not just on equality of opportunity (A), but also on equality of outcome (B) Do more than focusing on providing access to technology and making sure “they” know how to use “it” To prompt consideration of how we get from A to B: the process or practice of digital inclusion Digital inclusion is as much about what we do as it is about what we provide

7. Who are the digitally excluded in the context of education? Learners from socially deprived backgrounds Walker & Logan (2009) Special educational needs Disengaged (e.g. excluded from school) Hard to reach (hospitalised; travelling, rurally isolated) Digital Inclusion Team (2007) Youngest children Children in care (looked after young people)

8. My contribution to understanding the processes that maintain the digital exclusion of PEOPLE WITH LEARNING DISABILITIES

9. The early years…… Psychology undergraduate at Plymouth Polytechnic (1984-1987) final year dissertation with Dave Stephenson, using video analysis method to compare performance of adults with learning disabilities on computer “game” tasks and comparable non-computerised tasks Psychology PhD student, Keele University (1987-1993) Computer Applications to Special Education Applied Research Unit: research, consultancy, training Management of computers in adult special education

10. Reflections and Propositions #1 Technology might be an innovation, but it is not a panacea By itself, technology does not change the lives of disabled people because it rarely changes or challenges the attitudes and prejudices that people hold regarding disabilities the success of technology relies on support and expertise of teachers and support workers, who themselves rely on organisational support (training, resources, leadership etc)

11. My degree project No significant difference in performance between computerised and non-computerised tasks Meaningless to compare computers to teachers; experimental results produced varying results, variables hard to control for Teacher plus computers generally produces better “effects” CAI experiments, motivated by a deficiency view of people with learning disabilities at-risk, requiring a monumental intervention, represented by technology as a miracle cure

12. I worked in “mental handicap” hospitals, using computers with the “patients”, it didn’t stop abuse from happening……

13. Going backwards….. 24 years later…… a private hospital for people with severe learning disability and Autism was highlighted last week in a Panorama programme about systematic abuse and torture. That modern hospital did not appear to have one single piece of digital technology available for use by the patients No computers, no Internet, no mobile phones, No MP3 Players, no Ipads, no communication or assistive technology Those who are not viewed as human, are denied access to the everyday tools of humanity

14. My PhD thesis 9 case studies of the use of microcomputers by social and health care “centres” for people with severe learning disabilities Using educational change theories and models as a framework (e.g. Fullan) Successful computer use depended on a centre-focused strategy rather than innovation (technology) focused strategy Embedding in the systems and processes of the organisation to ensure supportive management, positive staff attitudes, sufficient and appropriate resources, training and support etc.

15. The middle years…… Lecturer in IT and Therapy, School of OT and PT, University of Southampton (1993-2002) Co-ordinator of first multi-disciplinary MSc in Assistive Technology, Medical Engineering Department, Kings College, London (2000-2002)

16. 2001: A study of learning disability and the Internet as a tool for managing identity Home Pages: create a narrative of our “self” Original Research Question Are people with Down Syndrome using home pages as a tool to express or explore their identity? If so are they using the home page to acknowledge or deny a disabled identity?

17. Methodology Opportunistic sampling by searching five home page hosts: before rise of MySpace and Facebook members.aol.com; geocities.com; members.excite.com; uk.profiles.yahoo.com; homepages.go.com UsingKeywords: learning disabilities, mental handicap, mental retardation and Down Syndrome. Analysis of form, content and language

18. Results The 20 personal home pages sampled included information on three main themes: Personal ( e.g biography, favourites, leisure activities, achievements-a capable self) Family ( e.g. family views of disability, part of a family web site with links to other members pages- a self that is loved, and belongs) Disability ( e.g. involvement in Down Syndrome Association, membership of disability “web rings”, personal views on disability- a self unafraid of stigma)

19. This is me, I am a member of the Down Syndrome community Up Down Syndrome! An extra chromosome makes you better than average, not worse. I'm trying to live like a human being, not a person with Down Syndrome

20. This is me, I am a member of a family I have lots of friends, Grandma, Mummy, Daddy, Katie, Shaza.. I was at Derwen College until July 2000. Now I go to PIP, the Paddington Integration Project. You can read what my mum says about my birth, babyhood, and my early childhood or read about me growing up my skill at sports, music…….

21. This is me, I am a member of a family and the Down Syndrome community My name is Laura and I turned thirteen on October 31, 1999. My parents have set up this homepage for us to tell you something about me and my interests. Laura was gifted with an extra chromosome at the time of conception, so every cell in her body contains three copies (rather than the normal two) of chromosome 21. This results in the condition called trisomy 21 or, more commonly, Down syndrome.

22. Observation An analysis of the language home pages revealed differences in the “voice” used to present the information. Seven of the twenty home pages were written in the first person, eight were written in the third person and five were mixed. Home pages sometimes hosted on a training centre site (very static) or as part of a larger family web site

23. The new, more compelling question Why were some pages written/hosted by a family member or another party? Poor digital literacy skills? Protective reasons (“keepers of secrets”) Protecting children from the full realisation of what having Down Syndrome means? Protective reasons ( avoiding internet abuse) One example in the sample of a page being closed down due to abusive comments

24. What does this have to do with Digital Inclusion? Access ? Use Competent ? Meaningful ? Empowerment Independent and self-sufficient ? Exerting control and choice over use ? Participation active participation (having an influence in the way technologies are used) ? Claimed Competency versus Presumed Vulnerability Empowering versus Protective supporting strategies

25. Reflections and Propositions #2 Double-edged sword of technology Technology might set people with learning disabilities free, but for better or worse it is people who mediate the extent of their freedom in that world

26. The later years…… Lecturer/Senior Lecturer in School of Education, University of Southampton (2002-2010) And of course professor here in Faculty of Education 

27. How can methods ILLUMINATE DIGITAL INCLUSION AND EXCLUSION?

28. Inclusive Research: Concepts of access for people with learning disabilities People with learning disabilities were equal partners in research seminars: presented, discussed, analysed Supported through committed advocacy work Included through the use of technology

29. Included in research through the use of technology, participatory methods & skilled, creative advocacy workers: Using mobile phones to organise their travel to and from the university Presenters with learning disabilities able to tell their powerful stories of access through PowerPoint with pictures and video clips

30. Included in “life” through the use of technology, participatory methods & skilled, creative advocacy workers Life-story work: digital cameras, PowerPoint, iTunes enabled people with learning disabilities to control what is said about them in person-centred planning meetings, interviews for care-workers etc Self- Advocacy groups: creative use of digital & video cameras to record visits to heritage sites and of communication tools to produce an accessible report of how well the site facilitated access for people with learning disabilities

31. Risk, potential and creativity

32. How can theory illuminate digital inclusion and exclusion?

33. Love in Cyberspace Generally speaking, the young adults do not assess the risk of getting into trouble as seriously as they assess the risk of not having anything at all ever happen to them. However, to get permission from their caregivers to go on using the Internet, it is important that they reassure those caregivers by declaring themselves to be aware of the different risk strategies they need to use on the Internet (Lofgren-Marteson: 2008:p133).

34. Reading 1: through a social-cultural lens Socio-cultural theories of risk argue that a neoliberal construction of society brings with it a risk culture which identifies those who pose a risk to the process of investing in a competitive, global economy this is in essence what much of the “digital exclusion=social exclusion” discourse is about This risk culture has led to an “individualisation of risk” where risk is attached to individuals, who are considered incapable of independent productivity and managing their own risk. They therefore become objects of surveillance and treatment. Groups or individuals become subject to “technologies that seek to improve their chances of a) being competent, rational, independent productive members of society b) managing their own risk.

35. Reading 1 cont… If people with learning disabilities are considered unequipped for productivity then, they are “relegated” as the burden of carers, including families and service providers Collective decision-making that seeks social justice and the removal of barriers to inclusion is rejected in favour of carers implementing their own risk rationalities, which are influenced by societal demands for assurance and insurance Protective, potentially uncreative strategies underpinned by a presumed “vulnerability” The carers in the study argued that the young people with learning disabilities were gullible and needed protecting from themselves and the Internet Argued for the need for Netiquette rules, banning certain sites

36. Reading 2: through a positive risk taking lens Positive risk taking is generally understood as enabling people with learning disabilities to have greater control over the way they live their lives, which may bring benefits in terms of independence and well-being, but may also involve an element of risk either in terms of health and safety or in a potential failure to achieve the intended goal Supported or shared decision-making: a decision-making and negotiation process where people with learning disabilities are supported in weighing the risks against the benefits.

37. Reading 2 cont… Central to the concept of positive risk taking is: a belief in potential of people with learning disabilities Presumed competence How canny is it of the young people in the study to know that they had to try and “fool” the carers into thinking that they were using the Internet in what carers considered to be safe ways?

38. Reading 2 cont.. Central to the concept of positive risk taking is: Creative “possibility thinking” Turning the “what if something goes wrong?” questions into “what it something goes right? questions Requires us to accept that it is OK for people with learning disabilities to seek loving and sexual relationships and to use the Internet to do this, just like many of us do Combining the netiquette training with other strategies that enable people with learning disabilities to make informed decisions

39. Reading 2 cont…. Central to the concept of positive risk taking is personal and organisational resilience Those people who are engaged in supported and shared decision-making regarding the perceived risks of technology use/non-use need to be supported by a resilient team/organisation which: Has experienced successes and failures Is optimistic Rejects social injustice and resists commonly held views of disability

40. And so finally a framework for thinking about processes that maintain digital exclusion Digital exclusion is maintained by our perceptions of: Technology as a panacea and a tool solely for economic independence and productivity Disability and presumed vulnerability Negative risk logic driven by need for accountability and responsibility

41. And so finally…. Digital inclusion is underpinned by: Healthy (dis)respect of technologies Presumed competence of people with disabilities Negotiated and informed decision-making The outcomes of Digital Inclusion such as meaningful use, empowerment and participation are open to different interpretations Acceptance that sometimes the worst that could happen to a person with learning disabilities can be that “nothing at all” happens Creative possibility thinking Embedded resilience, developed over time with a tolerance for “failures”

42. Rob Collins John Hegarty Neil & Trevor Ann Aspinall Thanks to all those who have inspired or supported me in my career jane.seale@plymouth.ac.uk Chris Abbott E.A Draffan Melanie Nind Gary Butler

43. Sample References Seale, J & Nind, M (2010) Understanding and promoting access for people with learning difficulties: seeing the opportunities and challenges of risk. Routledge. Nind, M & Seale, J (2009) Concepts of access for people with learning difficulties: towards a shared understanding. Disability & Society, 24,3273 - 287 Seale, J (2009) Digital Inclusion. A research briefing by the Technology Enhanced Learning Phase of the Teaching and Learning Research Programme. Available:http://www.tlrp.org/docs/DigitalInclusion.pdf Nind, M & Seale, J(2008) The hard work of access: lessons for education from a seminar series on concepts of access. The SLD Experience, 51, 11-18 Seale, J & Abbot, C (2007) Methodological issues in researching online representations: production, classification and personal web space. International Journal of Research and Method in Education, 30,2, 179-192 Seale, J (2007) Strategies for supporting the online publishing activities of adults with learning difficulties, Disability & Society, 22,2, 173-186 Seale, J.K and Pockney, R (2002). The Use of the Personal Home Page by Adults with Down Syndrome as a Tool for Managing Identity and Friendship. British Journal of Learning Disabilities,30,4,142-148 Seale, J.K (2001) The Same but Different: The Use of the Personal Home Page by Adults with Down’s Syndrome as a Tool for Self-Presentation. British Journal of Educational Technology, 32,3, 343-352 Seale, J (1998) Management Issues surrounding the use of microcomputers in adult special education. Innovations in Education and Training International, 35,1,29-35. Seale, J (1998) Two perspectives on the language of special needs computing: towards a shared view. Disability and Society, 13,2, 259-267.