Blunt, C., Blyth, C., Chapman, R., Frost, L., Hayward, D., Hughes, R., Perry, B. and Townson, L. (2012) Editorial: The research and work of learning disabled people with their allies and supporters. British Journal of Learning Disabilities. 40(2). 83-84 (original) (raw)

Abstract

This journal has been publishing articles related to the lives of people with learning disabilities over a number of decades. In recent times, some of these articles have been written in partnership. As an inclusive group of researchers at the University of Manchester, we are pleased whenever we see research with and by people with learning disabilities rather than on people with learning disabilities (see our views on this in Docherty et al. 2005). However, we also think it is time that people with learning disabilities became involved in more than just co-writing and research. We wanted to see a partnership approach to the whole process of peer review and publishing research. We bear witness to learning disabled researchers finding it difficult to access their rightful place in discussion within academia despite government departments, research councils and the larger charities demanding that inclusive/service user involved, or partnership research, is the ethical way of working. With this idea in mind, we met with the editor of the journal, Professor Duncan Mitchell to ask whether our group could, for the first time in the UK, complete the whole process for a special edition of the journal: that is, to peer review articles and write the editorial in partnership. We were very pleased that he was open to our request and allowed us the space to put the idea into practice. This ‘special edition’ is the result. It is a surprisingly lengthy process. We had our first meeting with Professor Mitchell in December 2010 where we mapped out what it was we wanted to do and set dates for each stage of the process to be completed. Every step of preparation for publishing this edition has been worked at together by members of the Partnership Steering Group. You can read more about our group by reading the interview with Andrew Holman. We put out a call for papers in February 2011, which asked for inclusive researchers to send in papers on the ‘Research and work of people with learning disabilities and their allies and supporters’. The papers were to be written in partnership with or by people with learning disabilities and based on inclusive research projects. We were delighted with the number of submissions received (far too many to include in this edition and therefore some papers will be published in later editions of the journal). Once the papers were received, they were anonymously peer reviewed by members of the Partnership Steering Group working together as a team. We held a series of peer review meetings over the summer of 2011 to enable us to do this. The papers we accepted were then returned to the authors with comments and requests for amendments. Once the amended papers were received and peer reviewed again, they were included in this edition. The process of peer reviewing and making decisions about the articles submitted was not an easy one, and we think we have learnt some important lessons that we would like to share with you. These include: •The terms ‘inclusive’ and ‘partnership’ research mean different things to different people; we received some papers that had not fully involved people with learning disabilities as researchers, but the authors still called their research ‘inclusive’. This worried us as it could mean that some non-disabled researchers believe they are doing inclusive research when they are only involving people with learning disabilities in very small parts of the projects. It is therefore good to point out exactly what the ‘sharing’ or ‘inclusive’ process is so that nothing is hidden from the readers view. This links into an idea that Elizabeth Harkness came up with about ‘rejecting research’ (Townson et al. 2004:73). She said that in any place where learning disabled researchers were not included, they were actively being rejected. •Some of the papers involved topics that were very sensitive (for example about cancer or abuse), and some of our group found this quite upsetting. We think useful learning disability research is about things that impact on the lives of people with learning disabilities and that in groups of inclusive researchers, some topics will affect particular individuals more than others. Members of our group supported each other when we were reading articles about sensitive issues. We had quite a discussion about it because there was an alternative view that people with learning disabilities must not be shielded from important events. Lou said that coping with distress is a real-life situation that requires appropriate and effective support. If a member of our group found a paper difficult and wanted to step out of that review, then their decision was respected. •Even though we asked that all the articles were accessible (and some authors have used graphics), there were papers that used lots of long and complicated words. We discussed whether we should ask for these words to be removed or explained more clearly. Again, there were different views about it within our group. Some of us thought they should be removed and others thought if we removed all the complicated words, it could be patronising to people with learning disabilities, creating a barrier to learning about new ideas. When we came across these words, we checked each time whether to ask for them to be explained or replaced. In relation to this, Richard pointed out he had learned that ‘epistemology’ was not the theory of getting drunk! •We noticed how some of the articles talked about people with learning disabilities as if they were all the same, that is, just one big group of similar people. We were surprised about this and asked some authors to remember that just because people have a learning disability, it does not mean they are not all different individuals with different experiences, ages, genders, sexualities and races. We think it is important that if one person has a learning disability, they do not think that they can talk for all people with learning disabilities. Similarly, non-disabled academics should not claim that their research findings apply to all people with learning disabilities. We hope we have been able to give you a taste of some of our discussions. We recognise there are no easy answers and that such work needs to continue and develop in order to improve. This special edition demonstrates that working together can be interesting, surprising, fun, hard work and allow everyone a chance to learn a lot from each other. We hope this will be the first of many more times that people with learning disabilities are involved in making decisions about the quality and relevance of learning disability research. The rich variety of articles included in this edition demonstrates a lively, growing and global partnership research community. The first article about Heidi and Philip was based on their experiences within the Canadian education system, following their transition from high school into the University of Manitoba. Their evidence-based ‘advice’ at the end of the article makes compelling reading especially in regard to the impact of a special school education. Paul Hughes’ auto-ethnographic account of understanding Aspergers Syndrome provided a unique insight into the complexities of communication alongside reflecting upon various approaches of teaching and learning around some key events in his life. This was followed by ‘Yes! I am researcher’. This paper was a very positive account of a personal research journey reflecting the experience of working in partnership where the research was focused on the everyday use of literacy skills in Australia. There were a number of interesting group articles that looked at relationships in Ireland, how people liked to live in Malta and how having friends helped you when you were stuck, from the Midlands, UK. These three projects covered significant issues in people lives and allow the self advocacy of people with learning disabilities to be heard through their constructive research approaches. Very sensitive topics were addressed. ‘Doing it together’ focused on the issue of cancer and breaking bad news where, similar to the Irish paper, focus groups were used. A concern arising from a number of the studies in this edition related to problems with ‘gatekeepers’ in learning disability research. Interestingly, the article, ‘Finding the Words’, used forum theatre to approach the topic of abuse in a creative and unthreatening manner. ‘Checking up on DES’ focused on Annual Health Checks in Oxfordshire UK, where learning disabled researchers set out to discover why the take up of such checks had been so low. Each of these articles shares creativity and imagination in how to make research relevant and useful to the lives of people with learning disabilities. It has been a great pleasure for us to have had the opportunity to read about these studies and put the special edition together. We very much hope you enjoy the results.

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