Kathy Talks About Writing in Partnership

The Writing Together project explored collaborative writing through the joint authorship of an article with a group of people with learning difficulties and was written up as a chapter of my PhD thesis (Boxall 2004). The article (which has now appeared as a chapter in a book) was written during the period January to April 2003. All of the people with learning difficulties who are co-authors of the article are members of the Steering Group for the BA Learning Disability Studies at Manchester University. The people with learning difficulties who sit on the Steering Group alongside students, colleagues and myself are all members of local People First self-advocacy groups. They are articulate, assertive, confident individuals who also members of a variety of health and social services committees. I knew they had some interest in ‘getting published’ – as one of them had already written a book chapter with one of my colleagues (Carson and Docherty 2002) and was keen to do something else. Other members of the Steering Group had also expressed the desire to ‘have their say’ or ‘have their names on something.’

Having learnt a valuable lesson from my work with Shaun Smith and Michaela Jones (see Boxall et al 2002), I wanted to try and ensure that the whole of the process of working together would be meaningful for the people with learning difficulties concerned. I didn’t want to use their ideas and experiences as ‘material’ for my writing. My aims for the Writing Together project were therefore as follows:

• To research and write a journal article jointly with authors with learning difficulties;
• To include the authors with learning difficulties throughout the research and writing process;
• To accurately represent the ideas of the authors with learning difficulties, rather than ‘using’ their comments as supporting material for my own ideas or analysis;
• To write a chapter for my thesis which presents my analysis of the process of working in partnership with authors with learning difficulties.

Approaching the co-authors
Steering Group meetings are ‘business’ meetings with long agendas. I knew from previous experience that if I were to go to a Steering Group meeting and ask the people with learning difficulties for their ‘ideas’, I’d probably get little response. However, if I put something on paper beforehand and took this along they would be more likely to challenge or criticise my ideas. With the deadline for abstracts fast approaching, I put together a brief abstract which covered some of the themes in a call for papers (Goodley 2002) and took this along to the next Steering Group meeting where five people with learning difficulties were present. All five were very interested in writing the article and immediately gave me their names and contact telephone numbers. They also suggested two other people, unable to attend the meeting that day, who might also be interested in joining us.

When I showed them the draft abstract, apart from a few changes to terminology (for example changing ‘evaluate’ to ‘check’) and adding a sentence stating that we would explain jargon or big words, there was little objection to what I had written. This worried me as I felt we would be working to the agendas of the journal editor and myself, rather than the agendas of the authors with learning difficulties. However, since our meeting was held on the date of the deadline for submission of abstracts, there was no time for further changes. I asked the people with learning difficulties present at the meeting to suggest a title for the article and one of them suggested ‘This is What We Think’ which made me feel a little more confident that it might be possible to produce something which represented their perspectives. If we could stick to that title, rather than my attempts at an abstract, there was a possibility that what we produced might be what they (the authors with learning difficulties) wanted to say.

The people with learning difficulties raised the issue of who would support them to write an article jointly with me. This was an important question. We had discussed support for teaching at previous Steering Group meetings where they had been concerned that support they received should be independent, otherwise there was a risk of people ‘putting words into their mouths’. They wanted to be able to disagree with me (in what we were writing), if they chose to do so. They were concerned that if I was supporting them to write something they wanted to say but that I disagreed with, I might not write it. I offered to try and recruit a research assistant from within the department to fulfil this role. Two research assistants later volunteered to help with the Writing Together project; both played an important role in facilitating the joint authorship process.

Writing together
A group of seven learning disabled researchers, two research assistants and myself wrote the article together as co-authors. After some discussion at the initial meeting, the learning disabled researchers stated that they wished to use the term ‘learning disabled’, rather than ‘learning difficulties’ within the article. The remainder of this chapter of my thesis also uses the term ‘learning disabled.’ Altogether we had ten article-writing meetings and two meetings to discuss reviewers’ comments. With the exception of the first reviewers’ comments meeting (which was unplanned) all of our meetings were taped and transcribed. We provide a brief explanation of how we wrote the article within the article itself. The reasons for omitting fuller explanation and analysis from my thesis are explored below.

The aims I list above were my aims. It became apparent that if there was to be shared, negotiated control between all of the co-authors that I would not be able to fulfil my final aim (to write a chapter for my thesis which presents my analysis of the process of working in partnership with authors with learning difficulties). I realised this during the course of our writing together when the research assistants and myself (referred to in the article as 'the university researchers') presented our ideas to the authors with learning difficulties (referred to as the 'learning disabled writers / learning disabled researchers'). These were largely wordy comments about the process of writing together from our perspectives and were intended either as an introduction or separate university researchers' section of the article.

I think that what I had in mind when I formulated my second aim (to include the authors with learning difficulties throughout the research and writing process) was that the learning disabled researchers would somehow 'translate' and 'make accessible' the more wordy or 'academic' parts of the article, written originally by myself or the other university researchers. Had I re-worded what I had written when writing the 'book chapter' so that it was more accessible to Shaun and Michaela (Boxall et al 2002), the whole of the 'book chapter' and the process of our writing it together would probably have had more meaning for them. I wanted to try and get this right in this article - hence the meeting where we (the university researchers) presented our 'wordy' comments.

The learning disabled researchers were not at all happy with the style or content of what I had written. We spent over an hour going through deleting 'big words' and re-phrasing one and a half pages of 16 point text (less than 400 words) which I had written - much of which in its amended format forms the introduction to the final article. We then abandoned this boring and time-consuming task. The process was however helpful and useful to me. For example, I had written:

Anne Louise Chappell (1998) argues that learning disabled people are marginalised within the social model of disability and their perspectives and experiences are missing from discussion.

This was changed to:

Anne Louise Chappell (1998) says that learning disabled people are left out of the social model of disability.

There was also heated debate about why it was that learning disabled people were left out of the social model. The learning disabled researchers stated in no uncertain terms that it was because the 'discussion' was inaccessible to them. Our discussion, like all of our meetings, was taped. I later transcribed what had been said by the learning disabled researchers and added this to the sentence above so that this section of the article now reads:

Anne Louise Chappell (1998) says that learning disabled people are left out of the social model of disability. The social model of disability is in writing so that professionals can look at it. It's not accessible to learning disabled people. We might want to study the social model ourselves but we can't because it isn't accessible. It should be in pictures and large print.

This was then checked at a later meeting and a picture added to illustrate the problem.

For me, participation in this discussion placed a whole new perspective on the marginalisation of people with learning difficulties within the social model. Until that point, I'd always viewed 'marginalisation' as the failure of academics/researchers to consider or include 'learning disability' or the experiences of people with learning difficulties when discussing 'disability' and the social model. Though I had thought about ways of trying to access people with learning difficulties' own ideas about the social model, I hadn't considered the importance of making social model ideas accessible and available for people with learning difficulties to study. Once this was pointed out to me, I could immediately see the importance of producing our article in large print with pictures without big words or jargon so that it would hopefully be accessible to other people with learning difficulties.

Although the learning disabled researchers were initially prepared to help us with 'translating' our ideas, they were not at all happy about there being two sections to the article - one for the learning disabled researchers and one for the university researchers. We talked this through and all of us eventually agreed that it wouldn't be a good idea. I transcribed and summarised this discussion (using the learning disabled researchers' words) as follows:

We talked about whether we would have two parts to our article; one part for the learning disabled writers and a 'professional side' for the university researchers. In the end we decided that if we did two separate sections we wouldn't learn from each other; it would be like 'them' and 'us'. It's better all in one together with everybody helping and learning from each other, so the two groups have worked in partnership writing this article together. But really there haven't been two groups because all of us are researchers and we have supported each other in writing the article. The university researchers, who don't know what it is like to be learning disabled, have supported the learning disabled researchers to write the article and they have learnt from the knowledge of the learning disabled researchers.

This was an immensely helpful meeting for me because it made me realise that I'd been approaching joint authorship from a particular perspective. Even though I thought I was committed to accessible writing, what I was doing was starting from my perspective, from how I saw or understood things, and then trying to translate this into terminology that people with learning difficulties would be able to understand. But if I/we were committed to writing accessibly about people with learning difficulties' experiences and ideas, from a learning disability standpoint , I could now see that their ideas were the place to start; not academics' or professionals' ideas about their ideas.

In retrospect, this seems very obvious, but it wasn't at the time. It also now seems obvious that given my second aim (to include the authors with learning difficulties throughout the research and writing process) that my final aim (to write a chapter for my thesis which presents my analysis of the process working in partnership with authors with learning difficulties) was inappropriate.

When we were discussing the possibility of having two separate sections for our article, one of the learning disabled researchers turned to me and said, 'You could just go off and write your own whole article on us couldn't you?' This was said in the context of a discussion which included criticism of 'professionals who think they know all about learning disability.' If I am committed to the development of a learning disability standpoint positioned to counter dominant discourses about learning disability, I don't want to emulate, in my own work, that which such a standpoint would seek to counter; that is 'academycentric' and 'professionalcentric' views of learning disability.

When I asked if I could include the article we had written together as a chapter of my thesis, one of the learning disabled researchers said, 'She'll be going, "Yeah! Yeah! I did it! I did it!" when really we did it for her.' Despite this, they all agreed to my including the article and appeared pleased and proud that I wanted their work in my thesis. They did not agree however to my writing about the process of our working together, or as they saw it , writing about them . They instead suggested that we (together) write another article about writing the first article. We haven't yet done this, though we have produced a poster about how we wrote the article, which six of us presented at a recent Disability Studies conference (Docherty et al 2003).

For my analysis within this thesis, I have compromised by including the short extracts from the article (above) accompanied by brief explanations of how they were written.  These same extracts and my ideas about them were shared with the learning disabled researchers in meetings to plan our poster presentation.  Though I have minimised discussion of the roles of the learning disabled researchers, I provide some discussion below of my role and the roles of the research assistants who volunteered to support the learning disabled researchers.

The role of the ‘university researchers’
I took a lead role in the writing process, transcribing all the tapes and pulling the transcripts together into the shape of an article. This was less difficult than might be imagined since once the initial tapes had been transcribed, subsequent meetings were discussions of these transcripts (produced in large double-spaced print on yellow paper for ease of reading). With the tape playing, the transcripts were read aloud and discussed paragraph by paragraph. Using a word-processor, transcriptions of these discussions could therefore be easily interwoven between the paragraphs of the preceding transcript. Since people generally talked slowly and carefully, one at a time, both because I requested this because of my difficulty hearing and also because we were making thoughtful considered comments, the tapes were not difficult to transcribe.

At the beginning of most of the meetings I busied myself making teas and coffees and the research assistants performed the vital role of chatting with the rest of the group about topics unrelated to our article. My previous contact with the learning disabled researchers had been through their role on the Steering Group for the learning disability studies programme. These Steering Group meetings, although fun at times, are largely serious occasions which can also be boring. I was concerned that our article-writing meetings should be as interesting and fun as possible. As Moore et al (1998) comment, the importance of setting up positive working relationships cannot be overemphasised. To this end I set aside a budget for refreshments and discussion of what we should spend this money on was central to our meetings.

Prior to our initial article-writing meetings, I prepared some large print notes of possible ideas for discussion: for example, a straightforward explanation of the social model of disability. I also took along several copies of The Politics of Disablement (Oliver 1990) so I could talk about the book and refer to the picture on the front cover (a wheelchair user disabled by the steps leading into a Polling Station). Though these were useful in our first meeting, we didn't need my prepared notes in subsequent meetings.

During the meetings I assisted with reading if people had difficulty, asked clarifying questions during the discussions and explained things in different ways if people didn't understand; the research assistants took on a similar role and also paraphrased and 'reflected back' some of the points that people made. After some initial reticence (possibly due to the tape) in the early meetings, there was little need for this latter role as most of the time everybody was very vocal. The research assistants transcribed the passages from the videos we refer to in the article. They also read my early drafts of the article and suggested changes where anything was ambiguous or unclear. The whole group then discussed and modified the final drafts in our meetings, adding pictures to help clarify what we had written. The pictures, produced by organisations of people with learning difficulties were from Access2Pictures (2001) and Change Picture Bank (2001).

One of the research assistants (Ian Kaplan) took a lead role in working with the learning disabled researchers to produce the poster entitled 'How We Wrote Our Article' (Docherty et al 2003) which we presented at the Disability Studies conference at Lancaster University in September 2003.

The learning disabled researchers' initial concerns that I might not write down anything I disagreed with appeared to dissipate early on and they did not call upon the research assistants for support in challenging me. I would like to think that this is because they feel I faithfully represented their words, views and ideas when drafting the article. However, I am also aware that given the power differential between the university researchers and learning disabled researchers there may well be other explanations for their apparent satisfaction with our working relationship.

The 'journal article' has since been published as a chapter in the book Another Disability Studies Reader? People with Learning Difficulties and a Disabling World (Goodley and Van Hove 2005). See: An example of writing in partnership.

This document is an edited extract from: Boxall, K. (2004) Research and the Production of Knowledge about Learning Disability , unpublished PhD thesis, University of Manchester . Contact: kathy.boxall@sheffield.ac.uk

References
Access2Pictures (2001) Compact Disc containing pictures, available from People First, 3 rd Floor, 299 Kentish Town Road, London, NW5 2TJ, UK. Telephone: 020 7485 6660, Fax: 020 7485 6664, Website: www.peoplefirstltd.com

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