04 SES 11 E, 'Double Jeopardy' : Researching with disabled and disenfranchised children and young people
This research workshop will be interactive and share methodological strategies and challenges that have faced four researchers whose qualitative research is with different groups of young people who are vulnerable and experience barriers in daily living due to a range of factors: those living with a complex life-limiting impairment; young people with learning difficulties; young people with profound and multiple disabilities and finally children and young people who have refugee status in the UK. It will explore different strategies to conduct research with young people and adults who for various reasons may struggle to communicate their thoughts and feelings in the same way as others. Practical strategies and different assistive technology will be shared.
Research with young people who have additional needs can be viewed as problematic and risky. There are additional ethical considerations to make, and issues around interpretation mean that attempts are not often made to seek contributions from these young people (Carpenter and McConkey, 2012). Historically, children and young people have not been viewed as able to participate in research (Clark et al, 2014) and viewed as ‘human becomings’ rather than individuals in their own right with their own ideas and preferences (Kay and Tisdall, 2012). This is even more apparent for those young people who are disabled, or who have complex needs, described by Lansdown (2005) as a ‘Double Jeopardy’ effect. Focus has been placed on ‘expertise’ of the researcher and design viewed as the remit of those who are specialist. This unequal relationship between ‘researcher’ and ‘researched’ has been questioned, and the importance of including participants in design and collection highlighted (Oliver 1994; Barton 2005). By using ‘plurality of methods’ (Danieli and Woodhams, 2005, P.285) and responding to the communication preferences of the participants, these pieces of research seek to further the shift towards seeing children as competent experts in their own lives. It is important to consider the disabling aspects of research (Barton, 2005) and focus on removing these barriers so that we have diversity in the perspectives represented in research. New disciplines are emerging that seek to take account of oft marginalised groups, for example, Disabled Children’s Childhood Studies (Curran and Runswick-Cole, 2014), recognising the unique experiences of disabled children.
With regard to research with disabled people, Oliver discusses the ‘parasitic’ role of the researcher and the importance of ensuring that questions are appropriate and relevant and do not leave disabled people feeling demoralised or disempowered (Oliver 1994). With regard to those with more complex cognitive impairments, issues of ‘voicelessness’ and judgments on whether self-determination is possible may lead parents and carers to substitute their voice and opinions for the person with PMLD (Imray and Colley, 2017). This can lead to what Simmons and Watson (2014 p. 14) call 'othering' - where the identity of the disabled person is largely constructed by others.
Nussbaum (2006 p. 159) reminds us ‘we all, more or less have the same sort of reason’ , and our own reason is not inherently any more or less reliable than that of someone who has complex difficulties. The Capabilities Approach developed by Amartya Sen (1992) and Martha Nussbaum (2006) supports this by stepping away from the insistence on 'autonomous rationality' (Shakespeare, 2013. p. 90) and encouraging practitioners to explore innovative ways of listening and understanding.
The process of dialogue can encourage and nurture in the way it enables people to make preferences about their lives, as Barton argues ‘ relevant research is essentially transformative, informative, contributing to the collective experience and understanding of disabled people over the ways in which disability is socially produced ‘(Barton 2005 p 318).
All four projects use an interpretivist methodology and qualitative methods, being interested in how vulnerable and /or disabled young people and families interpret their own worlds. Researchers are interested in ways of enabling young people and families to participate in research design and collection in order to ensure it is relevant and empowering. Young people with life limiting impairments and their families can experience anticipatory grief when they revisit difficult issues or talk about milestones (Eakes et al 1998). Using Solution Focused methods (De Shazer & Dolan 2007) to ask questions about their Transition to Adulthood enabled young people with life limiting impairments to discuss their hopes and aspirations for the future and the challenges that they face from a position of control. They were able to share what works well for them in their daily life as the experts of their own lives, rather than focusing on the challenges that face them thus avoiding feelings of demoralisation and disempowerment. In a second piece of research, the researcher is exploring how young people with learning difficulties view the new Education Health and Care plans that support young people from 0 – 25 years in England through education. This project has an emancipatory approach and a steering committee of participants has been set up to ensure that research design and collection is inclusive of young people and their families and relevant to their concerns (French and Swain, 1997). In both this project and a third project which exclusively explores support and outcomes for young people with profound and multiple disabilities during and after school and college, some participants do not communicate through speech and so researchers use a variety of different assistive technology such as apps and Wikis to gain insight into their thoughts and feelings. One researcher also talks about the use of Intensive Interaction. Finally, a project with children with refugee status in the UK uses photo diaries to investigate the views and feelings of refugee children to explore how children can develop resilience in the most challenging of circumstances and what society can do to support this (Ungar 2005). As Goodley has argued, life stories are powerful ways of ensuring people with additional needs can express their opinions and share how they feel, but they must be interpreted with the utmost reflexivity and care (Goodley 1996).
In order for research to ask the right questions, and to enable the process to be transformative, thought must be given on how research is designed and data collected. Wherever possible, vulnerable participants should be involved in the design of the project and/or the collection of research data. This is particularly so for groups of people whose voices have traditionally been unheard or ignored. Acknowledging that people are the experts of their own lives enables researchers to consult participants about the research project itself and explore the best ways of supporting people to communicate how they feel about their lives.
Barton, L. (2005) Emancipatory Research and Disabled People: Some Observations and Questions. Educational Review, 57:3, pp. 317-327. Carpenter, J., and McConkey, R. (2012) Disabled Children’s Voices: The Nature and Role of Future Empirical Enquiry. Children & Society, 26. PP.251-261. Clark, A., Flewitt, R., Hammersley, M., and Robb, M. (2014) Understanding Research with Children and Young People. UK: Sage. Curran, T., and Runswick-Cole, K. (2014) Disabled children’s childhood studies: a distinct approach? Disability and Society Vol 29 issue 10. Danieli, A., and Woodhams, C. (2005) Emancipatory Research Methodology and Disability: A Critique. International Journal of Social Research Methodology. Vol. 8, Issue 4. Pp281-296. De Shazer, S. & Dolan, Y. (2007) More than Miracles: the state of the art of solution-focused brief therapy. Philadelphia, PA: Haworth Press. Eakes, G. G., Burke, M. L. & Hainsworth, M. A. (1998) ‘Middle-range theory of chronic sorrow’, Journal of Nursing Scholarship, 30, 179–184 Goodley, D. (1996) Tales of hidden lives: a critical examination of life history research with people who have learning difficulties, Disability and Society, 11(3), 333–348 Imray, P and Colley A (2017) Inclusion is Dead. Long Live Inclusion. London: Routledge Johnson K and Walmsley J (2010) People with Intellectual Disabilities. Towards a good life? Bristol. The Policy Press. Jordan R (2001) Autism with Severe Learning Difficulties. London. Souvenir Press Kay, E., and Tisdall, M. (2012) The Challenge and Challenging of Childhood Studies? Learning from Disability Studies and Research with Disabled Children. Children and Society. Vol 26. Pp181-191. Lansdown, G. (2005) The Evolving Capacities of the Child. Italy: UNICEF Nussbaum M.C (2006) Frontiers of Justice – Disability, Nationality, Species Membership. Cambridge, MA. Harvard University Press. Oliver, M. (1992) ‘Changing the social relations of research production?’, Disability, Handicap and Society, 7(2), 101–114. Ouvry C (1987) Educating Children with Profound Handicaps. Kidderminster. BIMH Publications Sen, A (1999) Commodities and Capabilities. New Delhi India: Oxford University Press Shakespeare, T (2014) Disability Rights and Wrongs (2nd Edition). London: Routledge Sharma A and Cockerill H (2014) (4th ed) From Birth to Five Years. London. Routledge. Simmons B and Watson B (2014) The PMLD Ambiguity. London: Karnak Books Limited Stroggilos V and Xanthacou Y (2007) Collaborative IEPs for the education of pupils with profound and multiple learning difficulties. European Journal of Special Needs Education. Vol. 21, No. 3, August 2006, pp. 339–349 Ungar, M (2005). A Handbook for Working with Children and Youth: Pathways to Resilience Across Cultures and Contexts. London: Sage Publications
- Search for keywords and phrases in "Text Search"
- Restrict in which part of the abstracts to search in "Where to search"
- Search for authors and in the respective field.
- For planning your conference attendance you may want to use the conference app, which will be issued some weeks before the conference
- If you are a session chair, best look up your chairing duties in the conference system (Conftool) or the app.