+++++++++++++++++++++++++++++++++++++++++++++++++++++++ Disability Research Network e-Newsletter: Northern England Issue 1: April 2007 +++++++++++++++++++++++++++++++++++++++++++++++++++++++ News from the Research Institute for Health and Social Change, Manchester Metropolitan University (http://www.rihsc.mmu.ac.uk/) (1) Disability, discourse and community psychology seminar – 6th July 2007 at Research Institute of Health and Social Change (RIHSC), Manchester Metropolitan University This collaboration between Manchester Metropolitan University and University of East London invites papers from colleagues who are interested in bringing together critical ideas associated with psychology and discourse in relation to disability studies. This one day seminar, which follows on from the RIHSC conference (see below), will allow for a timely bringing together of ideas from forms of radical and transformative psychology and disability studies. We envisage papers being around 15 minutes long that promote debate, consideration and flag up opportunities for further discussion and deliberation for future collaboration, whether that be through research proposals, community psychological work and / or publication. We welcome submissions from activists, practitioners, students, academics, practitioners and researchers – and combinations of the above – who are interested in furthering the radical potential of disability studies. We welcome intersections of work and activism associated with, amongst others, areas of disability politics, learning difficulties and mental health. If you are interested, please send a brief abstract (150 words maximum) to Dan Goodley (d.goodley@mmu.ac.uk) and Mark Rapley (m.rapley@uel.ac.uk) by May 1st 2007. (2) Research Institute for Health & Social Change 2007 Annual Conference Wednesday 4th and Thursday 5th July 2007 John Dalton Building Chester Street, Manchester M1 5GD Health & Social Change: Challenges & Controversy Visit http://www.mmu.ac.uk/rihsc for details (3) Research idea from Paul Duckett (p.duckett@mmu.ac.uk) I am presently working with the Seroxat User Group to develop a funding bid (details below). Interest from other disability studies researcher welcomed: The Seroxat User Group is a UK patients group which provides support and advice to people who use or have used Seroxat (a prescription drug anti-depressant). Seroxat is commonly prescribed for people who have been given the diagnostic label of depression, anxiety and sexual dysfunction. In recent years, it has been shown that a significant number of people who have taken Seroxat have experienced severe problems in their attempts to withdraw from the drug and, whilst taking the drug, problems with suicidal and homicidal ideations. GlaxoSmithKline (GSK) are presently subject to a number of class action law suits in the UK, USA and elsewhere in relation to the company's alleged non-disclosure and distortion of the results of their clinical research trials on the efficacy and safety of Seroxat.The Seroxat User Group are a not-for-profit organisation that has so far relied on individual donations (surviving for four years on only ?800). In spite of the lack of funding, the Group has continued to operate a website resource for people concerned about the drug and have been lobbying government to ensure public safety is not being jeopardised in relation to the commercial activities of GSK. This proposed research, being developed in consultation with the Seroxat User Group (SUG), will: ++ engage in a piece of participatory action research with SUG to set up ++ and evaluate four self-help support groups, operated via general practitioner surgeries. ++ Research the relationship GSK following the attempts of SUG to file ++ class action lawsuits against GSK. If you are interested in exploring this research idea please contact Paul Duckett directly (4) Dan Goodley has taken up a new post at Manchester Metropolitan University. Details of recently completed research projects can be found at: http://www.shef.ac.uk/disabledbabies/ http://www.shef.ac.uk/jobsnotcharity/ http://www.shef.ac.uk/applieddisabilitystudies/ (5) News from colleagues - The HDCA Thematic Group on Health and Disability has put together a list of publications on the capability approach to disability and health. For more information on the HDCA thematic groups, see www.hd-ca.org/thematic_groups.php. If you want to join this Thematic Group, contact its coordinator: Jennifer Prah Ruger, e-mail: Jennifer.Ruger@yale.edu. (6) The Greater Manchester learning disability research group – We are an informal research group co-ordinated by Duncan Mitchell from Manchester Metropolitan University. Made up of interested individuals from universities in Greater Manchester our aim is to encourage collaborative learning disability research and share research methods and findings with each other, people with learning disabilities and practitioners. We have had three seminars this year and will be holding one more on the 8th May at the University of Salford (Speaker Dr David Race). Further seminars will be planned for the next academic year. Contact – Duncan Mitchell – d.mitchell@mmu.ac.uk who will be pleased to put you on the mailing list (7) Visiting researcher - Pedro M. Teixeira is a doctorate student, financed by the Portuguese Science Foundation, developing a project on the Portuguese Rehabilitation field with a concern for: Policy, Organizational and Family/Individual analysis. He worked for some years as a psychologist in rehabilitation and has been involved in some research projects with a particular interest in the Political and Community Psychology domains at the Faculty of Psychology and Educational Sciences in University of Porto. He has been on an exchange visit program at the Research Institute for Health and Social Change in the Manchester Metropolitan University from February until April. For more details contact Pedro on pteixeira@fpce.up.pt +++++++++++++++++++++++++++++++++++++++++++++++++++++++ University of Lancaster Dept. of Applied Social Science, Lancaster University. Message from Bob Sapey (b.sapey@lancaster.ac.uk) Last summer the Department of Applied Social Science hosted the third biennial disability studies conference to be held at Lancaster University on the topic of Disability Studies: Research and Learning. The conference attracted 191 people from 22 countries in four continents.The conference was held over 3 days from 18-20 September. Delegates attended sessions at which nearly 100 papers were presented concerned with research about every aspect of disabled people's lives and predicaments. Those attending ranged from budding postgraduate students, established international academics, politicians and government representatives to activist campaigners in disability rights. Debate in the plenary sessions was intense and challenging. The feedback on the academic quality of the event was very positive. Although it was originally intended that the conference would only be held at Lancaster for one year, it has proved to be a popular venue - hence the next conference has already been booked for the 2-4th September, 2008. There was a very strong support from people in the Nordic countries, in part because of the agreement between Lancaster and the Nordic Network for Disability Research (NNDR) to hold their conferences biennially and in alternate years. The next NNDR conference will be in May 2007 at Göteborg, and we shall be there. Message from Carol Thomas DISABILITY STUDIES – STUDY ONLINE FOR A POSTGRADUATE DEGREE WITH A DISABILITY STUDIES PATHWAY The Institute for Health Research at Lancaster Unimbines learning in social research methods and disability studies. The programme leads to a Masters in Research (MRes)(or alternatively a PG Certificate or PG Diploma)and has generic modules in research methods and a specialist module entitled: Disability Studies and the Research Agenda. The pathway is convened by Carol Thomas (PhD), well known for her publications in disability studies, and in the sociology of health and illness. The pathway is designed to develop and deepen understanding of social interpretations of disability and disablism. Students can explore the implications of ideas in disability studies for research, theory, policy, and practice. This online postgraduate degree programme will appeal to: • Professionals in health and social care services - especially services for disabled people. • Disabled people who wish to learn more about disability studies and its research practices. • Anyone else who seeks to learn about perspectives in disability studies, through a research focus. There are four other pathways in this postgraduate programme that may also be of interest: Intellectual Disability; Health Research; End of Life Care; Public Health. For further information – visit: http://www.lancs.ac.uk/fass/ihr/courses/ or contact: Sheryl Coultas Postgraduate Programme Secretary Tel: +44 (0)1524 592127 Fax: +44 (0)1524 592401 Email: ihr@lancaster.ac.uk Institute for Health Research, Lancaster University, Lancaster, LA1 4YT +++++++++++++++++++++++++++++++++++++++++++++++++++++++ University of Leeds, Centre of Disability Studies CDS is supporting CHANGE a national organisation controlled and run by people with 'learning difficulties' who are conducting a user led action project. Using various data collection tools including drama, the study aims to find out from young people with learning difficulties what their knowledge, hopes and dreams are in relation to sexuality and personal relationships. This is a three project which started in February 2007; Dr Ruth Garbutt is the researcher for this project. Seminars: April 18th: Professor Dan Goodley, Manchester Metropolitan University, 'Making connections between disability studies and psychology' April 25: A group of four visiting postgraduate students from Halmstaad University, Sweden. will do short presentations on their research projects. A Post Graduate Research Seminar for post graduate research students is currently being organised by CDS post graduates for May 12th. Further details will be announced shortly on the Disability- Discussion List: DISABILITY-RESEARCH@JISCMAIL.AC.UK Visitors: A visiting research fellow, Bruno Daniel Gomes Sena Martins from the University of Coimbra, Portugal, will be studying at Leeds for a two month period beginning 20th April For further details of CDS past and present activities and publications visit: http://www.leeds.ac.uk/disability-studies/ For the Disability Archive UK see: http://www.leeds.ac.uk/disability-studies/archiveuk/index.html For the Disability Research Discussion List visit: http://www.leeds.ac.uk/disability-studies/discuss.htm For Disability Press publications see: http://www.leeds.ac.uk/disability-studies/publish.htm +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ University of Sunderland – Message from Alan Roulstone alan.roulstone@sunderland.ac.uk “Am currently completing an evaluation of the modernisation of day services for disabled people in a 'Northern city'-exploring the notion of choices and voices in new services, the status and role of day centres in the future (if at all). I also aim to do some spin off work on collective versus individual identities in new service environments-as I think there are risks of individualism being seen as the formula for independence and I'm not saged with the disabled peoples movement. Have a UNESCO funded student from University of Warsaw doing work around new technologies and enabling/disabling impact in higher education in the North of England-happy to provide details. Hosting a regional seminar in Sunderland-on-sea (!)reflecting on the Life Chances report-presenters include Jenny Morris, Tom Shakespeare and Alan” ++++++++++++++++++++++++++++++++++++++++++++++++++++ Northumbria University - message from Toby Brandon (Toby.Brandon@northumbria.ac.uk) Northumbria University at its Coach Lane campus currently offers a BA Joint Honours Degree in Disability Studies and postgraduate supervision. In research Professor John Swain is working with Percy Hedley School on an ongoing development of their education provision. He has also recently completed his role as the UK Researcher for the EDAMAT project an EU Commission funded international project. In addition he has recently finished some independent evaluation work with Dr Sally French and Carole Thirlaway working with the Leonard Cheshire Disabled People's Forum'. Dr. Toby Brandon is currently conducting a needs assessment of people with MS living in Gateshead and has recently completed a consultancy on mental health assertive outreach with the University of Durham. In terms of publications Professor Swain has in press work entitled: French S. and Swain J. (in press) Service User Perspective. In Clutton S. and Grisbrooke J. (eds.) An Introduction to Occupational Therapy in Housing. Whurr Publishers Ltd. London. French S. and Swain J. (in press) Overview - Culture and Context for Promoting Health. In Scriven A. (ed.) Health Promoting Practice: The contribution of nurses and allied health professions. French S. and Swain J. (in press) Braille. In Albrecht G.A. (ed.) Encyclopaedia of Disability. Sage. London. French, S. and Swain, J. (in press) Service User Involvement. In Jones, R. and Jenkins, F. (eds) Management, Leadership and Development in the Allied Health Professions: an introduction, Radcliffe Publications. Abingdon. Swain, J. and French, S. (in press) Cultural Issues and Management. In Jones, R. and Jenkins, F. (eds) Management, Leadership and Development in the Allied Health Professions: an introduction, Radcliffe Publications. Abingdon. Dr. Toby Brandon has a Chapter entitled 'The Art of Affirming Identity' for a Sage book due to be published in 2007 entitled 'Disability on equal terms: understanding and valuing difference in health and social care'. Dr. Toby Brandon is currently organising a seminar series on 'Inclusion' to start in the autumn with Professor Peter Beresford, Professor Dan Goodley, plus others. He is also involved in the 'Partners for Inclusion' conference in Northumbria which aims to promote collaborative working and the ethos of Every Child Matters around 'special educational needs'. It will take place in June with Richard Rieser as the key note speaker. ++++++++++++++++++++++++++++++++++++++++++++++++++++++ Disability Research Forum: Sheffield Hallam University and University of Sheffield - message from Rebecca Mallett (r.mallett@shu.ac.uk), Katherine Runswick-Cole (karc@waitrose.com) and Tabby Collingbourne (t.collingbourne@sheffield.ac.uk). The Disability Research Forum (DRF) was established in 2004 to provide a space of support for postgraduate students involved in disability-related research. It has since grown into a dynamic pan-institutional forum which provides rare opportunities for disability researchers to come together and present work in a friendly and encouraging environment. The 'disability' seminars we have coming up in the next month or so are as follows: (1) DRF Meeting: April 11th April 2007 (Wednesday), 10.30am - 12.30pm in Heart of the Campus, Room HO34, Sheffield Hallam University. 1. "Experiences and identities of UK university students with Asperger Syndrome" ~ Manuel Madriaga (Research Fellow, Disabled Studenld). (2) 'The United Nations Disability Rights Convention' ~ Kate McCleery (Seminar hosted by the DRF) 18th April 2007 (Wednesday), 1.30pm-3.00pm in The Pod, ICOSS (Informatics Collaboratory of the Social Sciences), University of Sheffield. (3) DRF Meeting: May 4th May 2007 (Friday), 10am-12pm in Heart of the Campus, Room HO16, Sheffield Hallam University. 1. "Ways of Being Me: Reflections on a Working Lifecourse" ~ Diane Roberts (PhD Student and Research Assistant, Research Institute for Life Course Studies, Keele University) 2. "Title TBC" ~ Irene Rose (PhD Student, University of Manchester and Lecturer in Cultural Studies, Liverpool John Moores University) For more information on any of the above please email Rebecca Mallett (r.mallett@shu.ac.uk). (4) Disability and Ethics: A Seminar Day (Keynote speaker Jackie Leech Scully, plus paper presentations). 9th May 2007 (Friday), 10am-4pm in Abbeydale Room, University House, University of Sheffield. This workshop is aimed at postgrad/doc researchers, is hosted by the Disability Research Forum and is funded by a Skills Training Development Grant, administered by the Graduate Research Office, University of Sheffield. For more information and/or to book a FREE place please email Tabby Collingbourne (t.collingbourne@sheffield.ac.uk). Message from Nick Hodge at Sheffield Hallam University I am delighted to welcome two new members of staff to Sheffield Hallam: Rebecca Mallett who is leading the disability studies modules and Katherine Runswick-Cole who is teaching on the Early Years programme. Rebecca's recent research has been concerned with cultural representations of disability while Katherine has been investigating parents' experiences of special needs tribunals. Many of you will be familiar with their work in Sheffield through the Postgraduate Disability Research Forum. Sheffield Hallam is very keen to progress a disability agenda for the university and these two appointments will help us tremendously. ++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ University of Manchester – Learning disability studies team – contact iain.s.carson@manchester.ac.uk Current Research Being Undertaken by the Learning Disability Studies Team (1) Ed.D Research Currently Being Undertaken by a Member of the Learning Disability Studies Team Through exploring the experiences of disabled gay men, who either spend time or who have attempted to spend time within Manchester’s commercial ‘gay scene’, the project aims to explore some of the complexities associated with the intersection between disability, sexuality and community. The project has recruited a number of disabled gay men, who through the telling of their own ‘stories’ are providing insights into this interesting and so far under-explored and under-theorised area. (2) Internally Funded Project Focusing on the Complexities of Methodological Approaches to Research – This project seeks to explore some of the methodological complexities that are associated with the researcher/participant relationship. There has been, in recent years, much debate amongst academics and disabled people’s groups as to who should or indeed can carry out research into the lives of disabled people. This project seeks to explore how the declared identities of researchers influence the research process. The project will involve interviewing a number of disabled gay men who have previously been interviewed by an openly gay researcher. These interviews will explore how the participants believed that the researchers declared identity impacted on the research experiences. The project will conclude with a number of focus groups whereby the participants can discuss emergent themes with each other. (3) Project Funded by the Nuffield Foundation (Recently Completed) - This project which was undertaken in partnership with people who have learning difficulties, explored ways in which people with learning difficulties can be enabled to develop and sustain esearch was to determine the nature of support that people with learning difficulties themselves feel they need. Data has been gathered via a combination of focus groups and individual interviews and was analysed jointly by the research team and their partners with learning difficulties. The findings are too numerous to record with this forum; the following is a brief summary of the recommendations. It is clear that the ‘problem’ in this area lies firmly on the doorstep of society at large, including some of the people who are paid to support people with learning difficulties. Many of the issues emerging out of this research are directly linked to individuals’ perception of people with learning difficulties as human beings and members of society; in addition, it appears that there is a serious lack of awareness (amongst support staff) of key legislation such as the Human Rights Act (1998) and the incoming Mental Capacity Act (2005). The attitudinal barriers that exist within society can and should be challenged; however, although such a strategy can be both ongoing and long-term, it is also necessary that the following are considered with immediate effect: • All people with learning difficulties, particularly those living in residential care, should have access to a citizen advocate; • All people with learning difficulties should have access to education, training and awareness-raising in areas such personal and social development and sex education; • Support in sensitive areas should be provided by gender-appropriate staff, where this not possible, alternatives should be considered, e.g. the use of an advocate; • Organisations providing services for people with learning difficulties need to ensure that all of their staff are suitably trained, particularly in relation to ensuring that they understand the implications of imposing their own moral or religious stance on service users; • Accurate HIV-related information needs to be available and accessible to all people with learning difficulties, particularly those who are considering engaging in sexual activities; • Support staff need to be made more aware of what constitutes ambiguous, confusing behaviour, e.g. kissing service users and telling them that they are their ‘friend’. (4) Project Funded by the Higher Education Academy (ESCalate) This project seeks to explore the ways in which people with learning difficulties can be involved in and influence the delivery of higher education. For the past five years a group of people who have learning difficulties have participated in the delivery of the Learning Disability Studies degree programme at the University of Manchester; this has included teaching across all three years of the programme, acting as consultants and advising on the delivery of the programme. This project will focus upon developing and disseminating this good practice by sharing our experience with partners in other further and higher education institutions. (5) Ph D Research Currently Being Undertaken by a Member of the Learning Disability Studies Team Whilst the primary focus of this research is an exploration of the contribution that people with learning difficulties can make to knowledge production, a fundamental component is the methodology; the entire research process is being undertaken in full partnership with a person who has been labelled as having a learning difficulty. These issues are being explored via a focus (service responses to HIV-related issues encountered by people with learning difficulties) chosen by the research partner as a result of his frustration over existing research in this area being conducted by ‘professionals’, with little or no input from people with learning difficulties themselves. (6) Upcoming Conference Paper: 24th May 2007, Iain Carson & Craig Blyth, Place-Based Sex/Sexualities and Relationship Education Conference, Institute of Education, University of London “No Place to Go: the invisibility of disabled children” In recent years, there has been an increasing rejection of the dominant medical and deficit based discourses surrounding both disability and sexuality. Many academics in the fields of sexuality and disability studies now propose a model of ‘thinking’ about disability and sexuality that recognises that concepts such as ‘disability’ and ‘sexuality’ are socially constructed and are based largely upon the tenets and canons of western heteronormative society, as opposed to any essentialist biological origins (Weeks, 2000; Sedgwick, 1990; Herdt, 1997; Oliver, 1996). Through the analysis of narratives collected from disabled children and young people we will seek to explore how a pervasive disablist heteronormative assumption within society results in the sex and relationship needs of disabled young people not only being left unmet but actively denied. The paper will focus on data resulting from observations and interviews undertaken in special and mainstream schools, interviews with parents and a number of focus groups involving young disabled men who had recently left school. Findings indicate that the experiences of disabled young people are at odds with what is laid down in the National Curriculum (KS3 and KS4) in terms of learning about sex, sexuality, emotions, relationships, sexual health and ourselves (NCB, 2003). As a result of objectification by teachers, youth workers and even their own parents, many of these young people were denied access to developmental opportunities that would enhance their feeling of self in the context of sex and sexuality. In relation to the contextualisation of place, particularly institutional and media places, stark differences emerged compared with the experiences of non-disabled young people. We have analysed what is (or is not) happening in these places and have identified that as a result of the (social) barriers imposed upon disabled young people, their feelings and experiences of a sexual self are either denied or debased. +++++++++++++++++++++++++++++++++++++++++++++++++++++++ END OF NEWSLETTER CONTACT d.goodley@mmu.ac.uk for further information ++++++++++++++++++++++++++++++++ Professor Dan Goodley Manchester Metropolitan University Research Institute for Health and Social Change Division of Psychology and Social Change Elizabeth Gaskell Campus Hathersage Road Manchester M13 0JA Tel: (+44) 0161 247 2000 Fax: (+44) 0161 247 6842 E-mail: d.goodley@mmu.ac.uk For details of recently completed research projects and related research activities, please visit: http://www.shef.ac.uk/disabledbabies/ http://www.shef.ac.uk/jobsnotcharity/ http://www.shef.ac.uk/applieddisabilitystudies/