Post-doctoral Fellowship: Digital lives of people with learning disabilities

The digital Lives of People with Learning Disabilities

A post-doctoral three-year British Academy of the Arts Research Fellowship, 2016-2019

Introduction

Mobile technology is becoming ever more used by people with learning disabilities for entertainment, to socialise and enjoy self-expression Despite this, there has been very little research into the uses, experiences and the barriers encountered in negotiating smart phones and similar technologies in everyday life.

The British Academy, the UK’s national body for the humanities and social sciences, therefore funded a three-year project, ‘The Digital Lives of People with Learning Disabilities’, exploring this topic as part of its Post-Doctoral Fellowship scheme.

The specific aims were to explore:

Experiences of people with learning disabilities in using digital technology in everyday life
Whether and how these technologies enhance self-expression and inclusion
How the technology can be made easier for this particular cohort, so they can avoid being disenfranchised by the march of digital devices and media in everyday life.

And to….

Create a living electronic archive of participant experiences.

A large number of publications resulted from this project – the summary of it below consists of abstracts of the major articles.

Population and sample

Participants were adults, ranging from 18 to 64 years and had ‘mild’ learning disabilities. The National Association of Disability Practitioners (NADP) describes this term as referring to people who:

Are able to ‘hold a conversation, and communicate most of their needs/wishes,
Have some basic reading and writing skills’,
Can usually undertake supported employment, although needing ‘support with tasks such as budgeting and completing forms (NADP, n.d.).

They were recruited from adult Day Centres for people with learning disabilities, ‘Functional Skills’ departments at Further Education colleges, voluntary groups and other organisations supporting people with learning disabilities, mainly around London and the southeast of England.

In total, 114 people participated (of which 72 were interviewed individually)

Recruitment and issues around recruitment

Williams P (2020) ‘It all sounds very interesting, but we’re just too busy!’: exploring why ‘gatekeepers’ decline access to potential research participants with learning disabilities, European Journal of Special Needs Education, 35(1) pp.1-14,

Williams P (2020) Gatekeepers and support for research involving people with learning disabilities (symposium paper), European Journal of Special Needs Education, 35(1) pp.23-24,

A growing body of literature addresses why potential research participants decline to take part in research which could improve their and others’ lives. However, a neglected field of study concerns reasons why ‘gatekeepers’ - professional or informal supporters through whom access is negotiated – refrain from offering the people they support the chance to consider participation.

This paper draws on the author’s recruitment experiences in a project examining the impact of mobile technology on the lives of people with learning disabilities; his previous projects with similar cohorts, and existing literature to explore factors that contribute to gatekeeper non-compliance.

A framework-analysis of fieldnotes, interview data and other documents elicited three main interconnected factors:

Protection of vulnerable people and of self,
Institutional factors such as policies and practices,
Research factors, such as a failure to see any beneficial outcomes.

Tentative suggestions are made to help improve recruitment, although initial non-responses conspire against most potential measures (such as to liaise frequently with gatekeepers). The paper concludes by opining that the most effective policy is to make sure the research itself aims to improve the lives of participants, their peers, and the wider community – and that this is clearly outlined in any approach to gatekeepers.

Literature reviews

Literature reviews were undertaken on the following aspects of the subject, whether as literature review articles or within the body of a primary research article):

Mobile device usability (literature review article0

Williams P, Shekhar S (2019) Mobile devices and people with learning disabilities: a literature review International Journal of Computer Science and Mobile Computing 8(2) pp.34-43

Barriers to use (within primary research article)

Williams P (2019) Smartphones and people with learning disabilities: self-reported barriers to effective usage. Proceedings of the International Academic Conference on Teaching, Learning and E-learning in Budapest (IAC-TLEl), Budapest, Hungary, on March 15 -16, 2019. pp.7-16

Social media use

Williams P (2019). Facebook use by people with learning disabilities: The case for facilitated, guided autonomy. New Trends and Issues Proceedings on Humanities and Social Sciences 6(5), pp.99-108. Computer ethics and disability

Web site usability

Williams P (2019) A Tangled Web? How people with learning disabilities negotiate the World Wide Web: The accumulating evidence International Journal of Computer Science and Mobile Computing 8(4) pp.317-324

Ethical considerations

Williams P (2019) Accessibility, disability, technology and ethics in Quinn M, Byrne B, Jayakumar R (Eds.) (2019) Ethics for the information age London: Pearson/University of Hertfordshire.

Method developed: The Collaborative Personal Statement

This method was developed during the course of the project, deriving from the production of the electronic archive and the need for collaborative narrative to undertake this.

Williams P (2020) The ‘Collaborative Personal Statement’: a more inclusive method of data-gathering than audio recording interviews with vulnerable people European Journal of Special Needs Education 35(4) pp.1–16.

Inclusive research with people with learning disabilities often involves audio-recording interviews. However, although barely acknowledged in the literature, participants may not understand that every word recorded will be scrutinised forensically, from which possibly erroneous conclusions may be drawn. This paper describes an alternative method: the ‘Collaborative Personal Statement’ (CPS), which eschews the standard practice of making data gathering an unobtrusive, hidden audio-recording exercise in favour of dynamic interactive note-taking, in which participants’ notes are read back to them, to be clarified, edited and augmented as part of interview sessions. The resulting narrative is also reviewed and finalised to produce the CPS. The paper argues that this obviates problems around, in particular, member checking, as participants are not burdened days later with the onerous task of examining and amending lengthy verbatim transcripts, often replete with various unflattering disfluencies. Also, the constant refining and clarification entailed in producing the CPS helps enable researchers to better explore, understand and analyse participant perspectives and meanings. To put the method into a research perspective, a case study of its use is outlined – the creation of a ‘living electronic archive’ relating the use and impact of mobile technology on the lives of people with learning disabilities.

Fieldwork: usability

Williams P Shekhar S (2019) People with learning disabilities and smartphones: testing the usability of a touch-screen interface Education Sciences 9(4) e263 Available at: https://www.mdpi.com/2227-7102/9/4/263/pdf

[shorter version: ‘Smartphones and people with learning disabilities – testing the tap, swipe, pinch and other actions needed to use a touch-screen mobile’ in Proceedings of the International Academic Conference on Global Education, Teaching and Learning (IAC-GETL) Budapest, Hungary, on August 23and 24, 2019 pp.81-93]

Mobile phone technology is becoming ubiquitous. However, several unique usability challenges are still unresolved, including small screen size, device orientation changes and an array of interaction methods (tap, flick, pinch etc.) These may be particularly acute for people with learning disabilities. This study examined the usability of touch-screen interactions, the difficulties and possible solutions. An app was developed in which (12) participants accessed a Google Map and manipulated it to find various London Underground station locations. Text input (a password), tap, swipe and pinch were required, and their usage analysed. Many participants were successful in finding the required information. However, many difficulties arose, including mis-understandings of the labelling (a live ‘Welcome’ button was not tapped, whereas a short list of instructions was erroneously seen as a menu and so erroneously tapped to access each step in the process), over-sensitive zoom feature. Three categories of error were formulated from the findings: affordance, user and functionality. Recommendations are offered, such as using more appropriate ‘signage’ for link buttons (affordance); manipulating the zoom feature using + and - buttons rather than a ‘pinch’, which requires two fingered dexterity (functionality), and more formal training and familiarity (user).

Fieldwork: Use of social media (1) Facebook

Williams P (2019). Facebook use by people with learning disabilities: The case for facilitated, guided autonomy. New Trends and Issues Proceedings on Humanities and Social Sciences 6(5), pp.99-10

Facebook is a worldwide phenomenon. However, for people with learning disabilities the platform presents many challenges. These relate to social skills, self-expression and avoiding exploitation or other hurtful experiences. To explore factors relating to Facebook use or abstinence by this cohort; how these may be influenced by their learning disabilities, and how supporters can help mitigate any difficulties or barriers. In-depth interviews and observations of usage were undertaken to explore this phenomenon. Themes elicited centred around passive consumption of content, supporter controls, virtual connectivity, vicarious enjoyment, and aspects concerning the projection of self. Factors related to non-use included a lack of knowledge of or access to the platform.

To conclude, a case is made for supporters practicing ‘facilitated, guided autonomy’ by working with those whom they support to help evaluate ‘friend’ requests, compose posts and generally, emphasising their subservience to those whom they support, act as ‘Facebook assistants’.

Fieldwork: social media () CVT Connect

Williams P, Gibson P (2020) CVT Connect: Creating safe and accessible social media for people with learning disabilities Journal of Technology and Disability 32(2), pp. 81-92

Camphill Village Trust wanted to explore how people with learning disabilities could co-design a social media platform that would enable people with learning disabilities to network with others but and develop digital skills they need in a ‘safe space’ with support and advice when needed. A survey was undertaken of potential users to determine existing technology use and what was wanted from a social media platform. This was constructed according to findings, and solo and group interviews and another survey captured usage and opinions. Posting and reading the posts of others were popular, but use of other facilities (e.g. noticeboard) was limited. People valued its role as a social connector, and the closed environment was also seen as a benefit. Staff used it to aid social interactions and as a learning tool. Barriers included remembering passwords, uploading photos and lack of support, the latter due to competing time demands on staff. CONCLUSIONS: The study showed that it is possible to involve people with learning disabilities in the development of an electronic resource, and that a safe, protected platform can be utilised for both entertainment and education. Some staff were reticent, which highlighted the need for training and time allocation

Fieldwork: barriers to use

Smartphone ownership in the UK has reached saturation point. However, very little research has been carried out on the use, benefits or barriers of this technology by people with learning disabilities, either in an educational or social context. This paper reports on a study examining these issues via in-depth group and individual interviews with the cohort themselves (‘participants’) and those supporting them. In particular, it draws upon interview data from 59 participants and five supporters to explore self-reported constraints upon usage. Many ‘self-imposed’ barriers were elicited. These included a reluctance to reveal oneself online, concerns about factors beyond one’s control (viruses, unreliable hardware), and the burden of responsibility, specifically to not damage or lose devices. Constraints imposed by supporters included prohibitions, restrictions (temporal or locational) and usage monitoring, especially regarding social media. These constraints were justified as being to protect the individuals. Overall, use of the technology by this cohort can be seen as a tension between enablement and control, mediated by self-perception and notions of the fragility of the device on the part of participants, and supporters’ ideals of care and protection.

Fieldwork: Contributary and comparative study undertaken in Brazil

Williams P, Cendón B (2019) Mobile technology and everyday living: case study of the impact of mobile devices on people with learning disabilities in Brazil International Journal of Computer Science and Mobile Computing 8(4) pp.167-176

Williams, P Cendón, B (2020) Smartphones and people with intellectual disabilities: an international comparison of contextual social barriers International Multi-Conference on Complexity, Informatics and Cybernetics (IMCIC) Orlando, March 10^th - 13^thpp.25-30.

Two grants to visit the Universidade Federal de Minas Gerais (Belo Horizonte, Brazil) for one month were awarded to undertake research at the Universidade Federal de Minas Gerais (UFMG):

Conselho Nacional Das Fundações De Amparo À Pesquisa (National Council of Research Support Foundations) Brazil International research collaboration grant (2017)

UCL Research Catalyst prize (2019)

The studies undertaken at UFMG explored issues related to mobile technology use via in-depth group and individual interview and observation with 11 adults (aged 17-40) in a case study at a Day Centre in Belo Horizonte, Brazil, for people with learning disabilities*. Interviews were content-analysed to elicit themes such as expressions of self-advocacy; information-seeking, barriers to use etc. Usability issues were also explored by participatory observation of device usage during individual interviews. From such an examination, a rich picture emerged of the part mobile digital technology plays in the lives of this cohort in Brazil. As the study formed part of a much larger one based in the UK, having similar aims, objectives and methods, results are compared to those being gathered for the UK-based research, to explore any cultural or social differences that may affect the impact of mobile devices on the lives of people with learning disabilities.

Results suggested that much use tended to be passive, with participants watching YouTube and listening to music. Game playing did not seem to feature to any great extent, with only two of the 11 participants mentioning this. Even the use of social media, as with the UK study, tended to be as consumers rather than producers. Nevertheless, communication apps such as WhatsApp were exploited, and benefits in terms of self-expression/advocacy reported. Barriers included fear of assault and robbery, worries about call charges and other costs, and usability problems. The first two, of course, mitigate against fruitful exploitation of the technology, but problems with the technology itself could be solved by better education around its use – for example, simply by demonstrating and encouraging speech to text or the facility to record and send audio messages.

*Many thanks to all the participants, staff and supporters at the Associação de Pais e Amigos dos Excepcionais de Belo Horizonte where the research was undertaken

Fieldwork: Creating the electronic archive

Williams P (2022) Creating a living electronic archive with and about people with learning disabilities: methodological considerations International Journal of Pedagogical Advances in Technology-Mediated Education 2(3) pp. 39-48

Collections of the direct testimonies of people with learning disabilities regarding various aspects of their lives are rare (Keilty and Woodley 2013, and Deacon, 1974 being examples). More common are edited accounts where academic researchers have used answers to interview questions to explore their own research agenda, where the participants (the ‘subjects;’ of the research) do not normally possess or can edit their testimony and where other people see only quotes from it that are selected by the researcher for inclusion in an academic paper. The very few formal archives that exist are either in hardcopy or unavailable to the public. The Open University (OU, 2015) has modest amounts of material online, comprising of narratives of various individuals, and the Trinity Centre for People with Intellectual Disabilities at Trinity College, Dublin runs a project entitled ‘A story to tell’, consisting of ‘people's reminiscences about past experiences, told to another person or persons at various points in time’ (TCPLD 2020: online). The research project, the project web site promises, ‘will soon be available to download and read’.

Despite these initiatives, there does not appear to be any resource that:

includes multimedia or links between contributors,

is directly searchable,

is dynamic and ‘living’.

This paper reports on an initiative to create a ‘living electronic archive’ created and developed by people with learning disabilities in which participants relate their experiences of using mobile technology – the uses to which they put their devices, the benefits they feel accrue from their use, the barriers they may encounter, and how they think the devices (and, indeed, the support they receive in using them) could be improved. Findings related to these topics have already been reported extensively in the academic press (see, e.g. Williams and Gibson, 2020; Williams and Shekhar, 2019; Williams, 2019a, b) This paper discusses instead the dynamics of creating the archive and the method used to help participants create their testimonies.

Publications resulting from the project

Book

Williams P (2022) Researching with people with learning disabilities: Methodological considerations in Sekret I, Kurnaz M (Eds.) APBM 2022 - III International Conference on Applied Psychology and Business Management, 27 - 30 October 2022, Antalya, Turkey Bursa, Turkey: IATELS (International Association for Technology, Education and Language Studies) pp.41-42 [Conference abstract]

Articles and conference proceedings

Williams P (2021) Ethical considerations and dilemmas when undertaking ‘inclusive’ research with vulnerable people International Journal of Pedagogical Advances in Technology-Mediated Education 2(1) pp.18-25 Accessible at: http://patme-journal.iatels.com/index.php/patme/article/view/ethical-con...

Williams P, Gibson P (2020) CVT Connect: Creating safe and accessible social media for people with learning disabilities Journal of Technology and Disability 32(2), pp. 81-92

Williams P (2020) Gatekeepers and support for research involving people with learning disabilities (symposium paper), European Journal of Special Needs Education, 35(1) pp.23-24,

Williams P (2019). Facebook use by people with learning disabilities: The case for facilitated, guided autonomy. New Trends and Issues Proceedings on Humanities and Social Sciences 6(5), pp.99-108.

Williams P (2019) A Tangled Web? How People with Learning Disabilities Negotiate the World Wide Web: The Accumulating Evidence International Journal of Computer Science and Mobile Computing 8(4) pp.317-324

Williams P, Shekhar S (2019) Mobile devices and people with learning disabilities: a literature review International Journal of Computer Science and Mobile Computing 8(2) pp.34-43

Williams P (2019) Accessibility, disability, technology and ethics in Quinn M, Byrne B, Jayakumar R (Eds.) (2019) Ethics for the information age London: Pearson/University of Hertfordshire

Williams P (2018) The digital lives of people with learning disabilities: A qualitative study Proceedings of the International Conference on Education, Research and Innovation 2018, Prague, Czech Republic pp.1891-1891 [Conference abstract]

Williams P (2017) The digital lives of people with learning disabilities: methodological considerations Conference of the International Journal of Arts and Sciences 10(03) pp.209–214

References

Deacon J (1974) Tongue-tied: fifty years of friendship in a subnormality hospital London: National Society for Mentally Handicapped Children

Keilty T, Woodley K (2013) No going back: forgotten voices from Prudhoe Hospital, Sheffield: Centre for Welfare Reform Available online at: https://www.centreforwelfarereform.org/uploads/attachment/441/no-going-b... (accessed 22.11.21)

NADP (National Association of Disability Practitioners) (n.d.) Definitions of learning disabilities and learning difficulties Available at: https://nadp-uk.org/wp-content/uploads/2015/02/QCF-intro-to-LD-sample.pdf (accessed 02.07.24)

OU (Open University) (2015) Social History of Learning Disability: Life stories Available at: http://www.open.ac.uk/health-and-social-care/research/shld/resources-and-publications/life-stories (Accessed 02.07.15)

TCPID (Trinity Centre for People with Intellectual Disabilities) (2020) A Story to Tell National Institute for Intellectual Disability, Trinity College Dublin Available at: https://www.tcd.ie/tcpid/research/projects/lifestories.php (Accessed 25.11.21)