This article was downloaded by: [University of Otago]On: 04 October 2014, At: 14:53Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

Educational Action ResearchPublication details, including instructions for authors andsubscription information:http://www.tandfonline.com/loi/reac20

It gets me upset talking about the RoyalAlbert: collaborative analysis of theethics of an oral history projectSteve Mee aa Faculty of Health and Wellbeing , University of Cumbria ,Lancaster , UKPublished online: 29 Nov 2012.

To cite this article: Steve Mee (2012) It gets me upset talking about the Royal Albert: collaborativeanalysis of the ethics of an oral history project, Educational Action Research, 20:4, 497-513, DOI:10.1080/09650792.2012.727610

To link to this article: http://dx.doi.org/10.1080/09650792.2012.727610

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all the information (the“Content”) contained in the publications on our platform. However, Taylor & Francis,our agents, and our licensors make no representations or warranties whatsoever as tothe accuracy, completeness, or suitability for any purpose of the Content. Any opinionsand views expressed in this publication are the opinions and views of the authors,and are not the views of or endorsed by Taylor & Francis. The accuracy of the Contentshould not be relied upon and should be independently verified with primary sourcesof information. Taylor and Francis shall not be liable for any losses, actions, claims,proceedings, demands, costs, expenses, damages, and other liabilities whatsoever orhowsoever caused arising directly or indirectly in connection with, in relation to or arisingout of the use of the Content.

This article may be used for research, teaching, and private study purposes. Anysubstantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions

It gets me upset talking about the Royal Albert: collaborativeanalysis of the ethics of an oral history project

Steve Mee*

Faculty of Health and Wellbeing, University of Cumbria, Lancaster, UK

(Received 28 December 2009; final version received 29 April 2012)

An ongoing oral history project at the University of Cumbria seeks to uncoverthe lived experiences of people with learning difficulties who lived at the RoyalAlbert Hospital. A recently made video exposed the apparent distress thiscaused one of the participants. Ethical discussions about the project reached apoint of being ‘stuck’. The ethical dilemma was presented at the CollaborativeAction Research Network conference in 2009, and the ensuing discussion withconference participants produced a rich, collaborative unpicking of the issues.Problems of power, multiple discourse, historical relationships and ethicalfluidity emerged. Analysis of the praxis of the project – that is, ways ofthinking, doing and saying – suggests different ways of progressing.

Keywords: choice; collaboration; ethics; oral history; power; praxis

Introduction

Me: When you went to hospital did your mum see you, did your dad see you?Jill: No I never saw … I lived with my dad and mum, they couldn’t manage me.Me: They couldn’t manage you?Jill: No because … you know ….Me: At the Royal …Jill: ‘Cause I was hard work [Jill looks upset at this thought].

In this discussion, Jill Ward is describing why she first was sent to the RoyalAlbert, a long-stay institution for people with a learning disability. She lived therefor most of her adult life. She has many memories that cause her distress, includingthis one of being ‘sent away’ because she was ‘hard work’ for her mother. This dis-cussion was recorded and can be seen in a film on a website entitled Unlocking thePast (UTP1, 1′45′′ to 2′08′′).1 This film is part of an ongoing oral history projectmade by people who lived at the Royal Albert, a long-stay institution that closed in1998. The oral history project dates back to the 1980s. Recordings and data fromthis project are uploaded to Unlocking the Past (UTP2).2 This project is used as alearning resource for student nurses at the University of Cumbria. In 2009 thecourse was audited by the Nursing and Midwifery Council (NMC) and awarded theGrade ‘Outstanding’. The audit particularly focused on ‘user inclusion’ and the oralhistory project was cited:

*Email: stehaz.mee@virgin.net

Educational Action ResearchVol. 20, No. 4, December 2012, 497–513

ISSN 0965-0792 print/ISSN 1747-5074 online� 2012 Educational Action Researchhttp://dx.doi.org/10.1080/09650792.2012.727610http://www.tandfonline.com

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

An example of effective practice is the oral history group … The experience isdescribed by students as having the most positive influence of their career, as instantlyengaging, and inspiring and providing personal growth and skills which will enhancethe quality of care. A related, dedicated web site is accessed on a regular basis by lec-turers from other universities who use the information as part of their teaching plan.The website is described by a branch leader from another University as invaluable sitefor students in making sense of the history of services and the impact of long stayinstitutions. (NMC 2009, 3)

Jill and a colleague from the oral history group, Jeffrey Fardon, have presentedtwo conferences with me. This process has produced some significant ethical chal-lenges and these form the basis of this article. The particular focus is the way that Iattempted to unpick the ethical issues in collaboration with Collaborative ActionResearch Network (CARN) members at the Athens conference in October 2009.Somekh suggests that the, ‘quality of action research depends upon the reflexivesensitivity of the researchers, whose data collection, analysis and interpretations willall be mediated by their sense of self and identity’ (2006, 14). There is a theme ofreflexivity throughout this article. I have not always felt comfortable with what thisprocess has thrown up.

The reader may find it useful to view films (UTP1, UTP33) of the events beingdiscussed in this article as an aid to understanding. It is of course possible that thereader may reach different conclusions and I would be pleased to receive thesecomments as part of my growing understanding of the issues. The timeline of thispart of the oral history project is outlined in Table 1.

The first significant ethical dilemma became apparent at stage 3 of this timeline.Jill became distressed at one point of the conference presentation as a result of mesuggesting she might tell a particular story. I frequently take this prompting rolewhen we work together. This may be due to my memory being better than Jill orJeffrey’s or it may be that they expect me to take the lead due to historic relation-ships. These issues are discussed more fully below. This is my memory of the storyI suggested, as there is no recorded version:

Jill used to work on a ward where children lived. Her job was to get the children outof bed and dress them. One morning she was feeling unwell but the staff on the wardthought that she was slacking. When she was unable to complete her tasks Jill wassent to Coupland, a ward which she has described as a ‘punishment ward’ and‘probationary, a place for the naughty ones’. (UTP1, 23′15′′ to 24′19′′)

At the time of the presentation she appeared to be upset at the memory of thisstory. When reviewing the video (UTP3) afterwards, it became apparent just howupset Jill was at this point. She appeared to be very close to tears. This was thepoint at which I first really questioned how acceptable it was for Jill to remain partof the project. The overall issue that also became apparent was the way in whichmy contribution to the conference seemed inappropriate. The following issuesemerged from this analysis:

I stood up at the start of the presentation and Jill and Jeffrey sat down. This made melook dominant and in charge. It is interesting that Jill stood up in response to me, andstated that she was doing so. This got a round of applause from the audience whereasI did not. (UTP3)

498 S. Mee

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

I introduced the project. This put me into the role of informer and placed Jill andJeffrey into passive roles.I prompted Jill and Jeffrey to tell various stories. I also interpreted questions from thefloor. I appeared to be more intelligent/able.Jill was distressed.Despite the power issues above, Jill did poke fun at me when I stumbled over words.This got a laugh from the audience. However I appeared to collude with the audiencewhen I suggested Jill gives me a hard time. (UTP3 2′07′′ to 2′40′′)

I think this transaction may merit discourse analysis in its own right but this isbeyond the scope of this article.

These concerns led to the discussions at stage 5 of the timeline. It was decidedthat a film of them talking to camera with me out of frame, followed by carefulediting, would address the issues. At future conferences and taught sessions wecould present the film and then Jeffrey and Jill could answer any questions fromsubsequent discussion. This would allow me to take a back seat and ‘hand power’back to them. The film was made (UTP1, stage 6 of the timeline). During the mak-ing of the film I recorded a conversation with Jill that took over an hour. I sat outof camera shot for the whole time. A video camera was left running for the durationof this interview. I left the room twice, once in the middle of the interview and thesecond time at the end of the interview. On both occasions the camera was stillrecording. When subsequently editing the video I found two comments from Jill

Table 1. Timeline for this ethical dilemma.

Stage Date Event Comments

1 December2008

Jill, Jeffrey and myself presented atconference

Very well received, and Jilland Jeffrey appeared toenjoy it

2 June 2009 Jill, Jeffrey and myself presented atconference and filmed the event (UTP3)

Jill was upset at one point

3 July 2009 Reviewed the film I appeared to be in charge.Jill was distressed

4 September2009

Collaboration on ethical dilemmas at aCARN meeting

5 September2009

Collaboration with my father onresolving power issues presented by thefilm UTP3

I realized that I hadunconsciously chosen to ‘bein charge’

6 October2009

New video produced (UTP1) with Jilland Jeffrey as ‘talking heads’

Addressed problems atstage 3

7 October2009

Out-takes from the film showed Jill wasdistressed

I only spotted these bychance

8 October2009

I met with Jill to discuss her distressand she chose to leave the project

I was sad at the lostopportunity for me

9 October2009

The project was to be presented at theAthens CARN conference

I was unsure what to present

10 October2009

Collaboration with Ruth Balogh andMargaret Ledwith on eve ofpresentation

Decided to change thepresentation to focus on thedilemmas

11 October2009

Collaboration with people who attendedmy presentation

Rich discussion about mydilemmas with CARNcolleagues

Educational Action Research 499

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

during these two absences. She had apparently forgotten the video camera wasrecording. This is stage 7 in the timeline.

The critical moment

In the first out-take Jill said:

‘Come on….I want to go home!’ [The emphasis is how Jill expressed these words.]She was looking at her watch and sounding annoyed.

At my second absence the following happened:

Jill rummaged in her handbag and watched me leave the room. As the door clicks shutshe says ‘talking about the Royal Albert’. Following an eight seconds gap she says‘talking about the Royal Albert gets me all upset’. Her tone suggests that she is upset.

I was shocked to discover this out-take and my immediate thought was that Jillshould be spared any further anguish. I decided to offer her the opportunity towithdraw from the project.

I met with Jill within a week to discuss the matter (stage 8 of the timeline). Thesame member of staff who had brought her to the original meeting supported her.Jill appeared to trust this staff member. I asked Jill two questions:

• Would she like to exclude herself from the oral history project?• Could the out-takes be used in a conference presentation?

The words ascribed to Jill below were not recorded but written up on the same dayas the meeting. The words are as exact as my memory allows but do convey themeaning as understood by me. At first Jill said ‘Yes, finished with the RoyalAlbert’, giving a sweep of her hand that conveyed finality to me. Whilst acknowl-edging that Jill could do exactly as she pleased, the supporting staff member sug-gested that when Jill had done an oral history session she was always pleased thatshe had done it. Jill replied ‘yes that’s right I do’. Furthermore, when I went on toseek permission to use the out-takes in my presentation at the CARN conference,Jill said ‘I will be able to come to that’. She appeared to be ambivalent; she wantedto go to the conference and yet did not want anything more to do with the project.I explained that my purpose in using the out-takes was to help people like me,doing work with people who were telling their story, to do it in a way that mightbe less upsetting. She readily agreed to this and appeared to be pleased with theidea. I was happy that she understood the concept of ‘conference’ as she has pre-sented at two with me. Jill then had the rest of the day to discuss the use of theout-takes with her support staff. After this she still very readily gave consent forme to use the out-takes.

At this point I was clear about using the out-takes and Jill was clear about notwanting to be part of the oral history group but requested that I still invite her sothat she could choose each time. I was, however, unsure whether the whole oralhistory project was ethical. Should it cease? This was five days before the CARNconference in Athens 2009. On the eve of my presentation at the conference thediscussion at stage 10 of the timeline took place and I decided to shorten the pre-sentation and leave space for discussion about the fact that I was ethically ‘stuck’.

500 S. Mee

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

At the conference I presented the project but focused on the dilemmas as describedat stage 10 of the timeline. Rich discussion took place in the second part of my pre-sentation when I sought help from those present. During the rest of the conferenceand subsequently I attempted to develop an understanding of these issues in collab-oration with other CARN members. Some of this feedback was written and sometaken as notes from discussion. Subsequent analysis of this feedback suggests thefollowing categories:

• Letting me off.• Power.• How to resolve the power issue.• Benefits to Jill.• Jill’s dilemma.• A utilitarian view.

These categories will be discussed in turn. The comments made by the collaborat-ing CARN members are in italics. In most cases the wording is as used by theCARN members. The discussion that takes place does not include all of thecomments. I have followed my own line of discussion reflecting the resonancemade by particular points. Because of this, justice has not been done to all of thecomments.

Letting me off

Are you being too hard on yourself?I think the worst thing you could do would be to stop inviting them in just becauseyou find it uncomfortable. I think this would be focussing on your own needs otherthan their needs for social contact. I only say that because I know you are not selfinterested here.The fact that you have asked the question indicates that your intentions are sound.Is over-apology a problem here?

It was striking to me how many people suggested that I really could be ‘let off’.The comments concerning lack of self-interest, empathy and reflexivity suggestedthat my personal characteristics determine the ethical soundness of the project. Thisproved problematic for me, partly because it seemed ‘safer’ for the project to have‘stand-alone’ ethical appropriateness. In part this might be due to the fact that myacademic life commenced in the early 1970s, an era of ‘objective science’ hege-mony, with a subsequent career in nursing with its hegemony of medical models ofscience. It might also be due to the fact that I am not entirely convinced by myown motives. I have had a lifelong commitment to emancipatory politics and a cur-rent professional aim to equip student nurses with the tools to break patterns ofoppression of the people they support. However, there are substantial rewards andbenefits to me for working on this project. There has been a peer expression ofrespect for the skills and expertise this project showcases. There is the kudos of theaudit evaluation, the positive responses from students and people attendingconferences. Student nurses have been very positive about my use of the oralhistory project in the curriculum. Written feedback from students has included:

Educational Action Research 501

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

Thank you for your excellent teaching.

Oral history has been the highlight of my nurse training.

Several aspects of feedback have included comments on my ‘professional skill’.The first example below followed the conference presentation at stage 2 of the time-line and the second at stage 10 of the timeline:

Your skill in enabling Jill and Jeff to present was excellent.

You used good counselling skills to help them tell their story.

Finally, from the feedback from CARN members at stage 11 there were severalsimilar comments, including:

You do awesome work – I felt humbled.

You should have confidence in your empathic abilities to judge. You have an inclina-tion to empower others.

In my experience it is unusual to get such personally validating comments whenworking in higher education! There is something about this work that seems tocaptivate the audience. I never tire of hearing the stories from the oral history groupand, in this particular case, it is Jeffrey and Jill who are the main focus of the inter-est. As the quotations above demonstrate, even where they are the main focus thereis considerable benefit to me. I have questioned myself about this. Are the benefitsto me merited? Am I having a ‘free ride’? To what extent is this kudos the motiva-tion for developing this work? Would I be as committed to the project if theresponse was less favourable? Publication and possible career advancement mayfollow. How much personal gain is acceptable ‘on the backs’ of the people forwhom the oral histories are lived experiences? This particularly applies when theexperience proves to be stressful.

Power

Suggestions about power from the collaboration included:

Is Jill in awe of me? Does she want me as a friend? As a son?There is a historic professional relationship including power.Jill and Jeffrey are used to doing as they are asked and keeping out of trouble.Have I been too active as a filter?Who owns the stories?The presentation is translated into a form recognisable at conference. Why?The context matters. In a one-to-one for the second film there are connotations ofmeeting with professionals. The conference is a social setting.

Jill is quite often anxious about getting into trouble. On the day of the filming atstage 6 of the timeline she was eating a biscuit and brushed some crumbs from herlap onto the floor. She appeared to be very anxious about whether the floor had

502 S. Mee

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

been cleaned and whether she would be in trouble. In the film the following talktakes place:

Me: What did people get into trouble for at the Royal Albert?Jill: what you mean us? [Pointing to herself]Me: MmmmJill: Oh ‘cos they weren’t doing their job properly … You’d get told off. (UTP1, 13′

50′′ to 14′20′′)

Two aspects of power can be seen here. Being told off for not doing your job prop-erly indicates where the power lay in the institution. There is also the establishedstory from stage 3 of the timeline, where she was punished for ‘malingering’ whenin fact she was ill, which she finds distressing 40 years later. Secondly, when askedwhat happened to ‘people’ at the Royal Albert, Jill asked whether that meant ‘us’,meaning ‘her and people like her’. She introduced a differentiation, a ‘them and us’.

The power relations are illustrated by two examples of talk from the videoproduced at stage 6 in the timeline. Firstly we discussed the use of the terms ‘highgrade’ and ‘low grade’; it is perhaps surprising that these were ‘technical’ categoriesused to denote levels of cognitive impairment when I trained in the late 1970s. Thefollowing talk took place:

Jill: Some of them couldn’t help themselves.Steve: Were they the ones the staff called ‘low grades’?Jill: Yes.Steve: What did you think about those people?Jill: I called them ‘high grades’. (UTP1, 17′14′′ to 17′57′′)

Jill appeared to be demonstrating an acceptance of the terminology used to subcate-gorize the larger group (‘subnormals’ to use the terminology of the times) to whichshe had been assigned. She appeared to be conferring a ‘respectful’ title to thosewho had been diminished by the label ‘low grade’. Calling those people ‘highgrade’ was a sign of her respect, with a corollary that she thought the staff actionof such labelling was disrespectful. Similarly Jeffrey, who has often expressed angerat the use of the term ‘low grade’, was asked:

Steve: What was it like being called a ‘high grade’?Jeffrey: That was alright. (UTP1, 18′45′′ to 18′50′′)

He too appeared to accept the label and see it as positive. I belong to the category‘staff’, those people with the power to assess people and confer such labels. Dothey see me as ‘staff’ or ‘friend’ or both? Indeed, I had chosen these two people topresent with me at conference because I had deemed them most likely to be able tomanage the demands made by such an activity. By selecting them to present atconference, had I simply confirmed their historic label of ‘high grade’ and myhistoric and current position of dominance; that of ‘conferrer of labels’? I also rep-resent the oppressor as an ex-member of hospital staff. The ethical problem of usinga ‘captive audience’ was noted by Robinson and Kellet (2004). The researcher mayhave ‘access’ to people as a consequence of other roles she/he holds, and wherethat role is one of power those people may be seen as ‘captive’ for the purposes of

Educational Action Research 503

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

the research. I think that those involved in the oral history project might be seen as‘captive’ in the sense that Robinson and Kellet intended.

The final comment in the list above is that the one-to-one involved when wefilmed for stage 6 of the timeline carried historic connotations for Jill and Jeffery,and indeed for me. In the past such a meeting with a nurse might have meant thatthe person with a disability was in trouble. It might have resulted in decisions beingmade about one’s life. In the film (UTP1, 23′15′′ to 24′19′′) Jill described that onthe day of her ‘resettlement’ from the Royal Albert she actually thought she wasbeing sent to the ‘punishment ward’; she thought she was in trouble. Such a meet-ing might also have been the setting of an assessment; someone who is paid to besat in judgement with all that implies for power. It is certainly the case that Jill wassubdued at the filming at stage 6 of the timeline where the meeting is one-to-one.The conference at stage 2 of the timeline is more of a social situation and possiblyless threatening because of it. In it Jill appeared more lively, engaged and happier.

Although Jill did refuse to tell a story I suggested at stage 2 of the timeline,overall I think there is a very big question of the extent to which Jill has suffi-cient personal power to make a free choice over whether she takes part in thisproject.

How to resolve the power issue

The power differential might be resolved using a different method of recording andproducing video material. CARN members made the following suggestions:

A big brother room where they could say something as they wish.What about getting Geoff and Jill to fictionalise it? Actually some of this has takenthe life of fiction over time.Give a camera (simple to operate) each to tell their own story of their lives and invitethem to talk to our students about any of the clips in the video. Some days they maybe happy to recall the bad stuff but other days they may want to discuss the positiveaspects of their lives. At present they do not seem to have an option.Ask them in to talk about what they would want from a carer focussing on their aspi-rations which may not be at the forefront of the student’s minds.

The conclusion was that some of the power rested with the technology. This ideadoes challenge some of the underlying discursive conditions. An assumption aboutlack of competence and cognitive limitations might affect both myself, as thecoordinator of the project, and Jill and Jeffrey as the storytellers. However, the‘competence’ discursive conditions have changed in the last two years as Jill andJeffrey have learnt to present at conference. The first time this was attempted, stage1 in the timeline, I had no real idea how it would work. Would they freeze orrefuse to take part? Together we have already moved from certainty into theunknown, we are the ‘nomads’ described by Pearce (2009). It is these unknownoutcomes that present us with the ethical challenges.

Pearce develops the idea of ‘nomadic ethics’ which allow research to progressand transformations to take place rather than become mired in fear of ‘punishment’.She cites Lather (2007), who suggests that it is these ‘politics of fear’ that constrainour research. Nomadic ethics should seek active engagement and inspire creativeresponses in situations of what she describes as ‘stuckness’.

504 S. Mee

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

Most of the ideas suggested by CARN members in respect of power suggestedthat I, and the power I wield, should be divorced from the technology. My responseto these suggestions has been instructive; this seems to be a very difficult solution.The ‘incompetence’ discourse might be a factor in this as it is easy to fall into thetrap of assuming that Jill and Jeffrey need help in recording. I can imagine a sce-nario in which they would not do the recording if it was not timetabled into theirday. They too might have accepted this discourse and assume they need help. Amore worrying consideration, at least for the ethical discussion in this article, iswhether they would even wish to record their stories about the Royal Albert. As Iattempt to imagine their response it appears to be the case that they really areengaged in this project because they have been asked by powerful others. It is alsoprobably the case that Jill and Jeffrey have engaged with the ‘incompetence’discourse and assume that they need help.

Benefits to Jill

Consider the therapeutic benefits.At conference she mixes with students and can appear ‘normal.’Is Jill getting involved just for the socialising?The video and question and answer session allows Jill to have emotional distancefrom the stories.

The idea of ‘therapeutic benefit’ is interesting as it could be seen to reflect the‘disability’ discourse. Wolfensberger (1972) argued that if people are seen in therole of ‘diseased organism’ then the things they do will be seen as ‘therapeutic’.For example, growing some plants becomes ‘horticultural therapy’ and painting apicture becomes ‘art therapy’. It is interesting that a local clinical psychologist madean informal referral to the oral history group for a man who has problems comingto terms with his past in the hospital. It is suggested here that Jill might have ‘ther-apeutic benefit’ from telling her story. If I was to tell a story about a bad time inmy own life it might be described as ‘cathartic’. A reason that this difference mayhave unconscious implications for Jill’s involvement in the project is that ‘therapy’often implies a knowledgeable specialist who advises what is good for the ‘patient’.Jill’s life is still supported, and even managed, by a care service. If these uncon-scious discourses are in place then there are significant problems for her making adecision to leave the project.

There are claims that people with a learning disability who are involved in oralhistory projects find empowerment through the process (Atkinson 2004). Thisincludes making sense of one’s life, being seen as ‘expert witness’, role reversalwhere the storyteller becomes ‘hero’ and collaboratively re-telling stories and shar-ing the meaning as an act of survival and defiance. Atkinson goes as far as saying:

The research on which this paper is based may be seen as part of a ‘resistance move-ment’ (Jillman et al., 1998) where people with learning difficulties have co-constructedtheir personal and shared histories. (2004, 700)

Atkinson’s research was more collaborative than my work. She describes how herrole changed from group facilitator to scribe. This may be the area in which I have

Educational Action Research 505

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

not moved far enough. However, I have noted some of the features described inAtkinson’s work in my own. For example, the oral history group has often sharedmemories of matron controlling the dances. The film includes a passage where Jef-frey mimicked matron’s voice (UTP1, 9′05′′ to 10′35′′). He also told the story as‘hero’, telling matron to ‘shut your bloody trap’. He also described how he reportedstaff abuse of other residents (UTP1, 14′50′′ to 15′27′′).

If the benefit to Jill is the socializing, some significant questions are raised. Itcan be observed that Jill is far more animated in the conference film at stage 2 ofthe timeline than in the film at stage 6. In the former she uses wit and performs tothe audience, whilst in the latter she appears somewhat subdued. The followingsuggestion was made in the collaboration:

Get them conference audience attention for something entirely different and see whichthey prefer.

I do think that both Jill and Jeffrey enjoy the respect shown by audiences and theopportunity to be in the powerful role of ‘teller’ rather than the passive role of ‘lis-tener’, which would be a more typical role. A discussion of this issue can be foundin Mee (2010).

Jill’s dilemma

Is the dilemma for Jill? Does she want the interaction but dislikes the memories?She wants to do as she pleases but also what she perceives as pleasing me.She was expressing a clear ambivalence and even contradiction in a way more con-ventional discourse prevents.

These points raise the question of whether Jill is placed in the situation of havingto choose between not being involved in the group and not getting other things shewants.

A utilitarian view

The project should continue for the greater good.My agenda is the use of the project for significant learning.What would be lost by letting the project go? What purpose would be served?

Overall those who commented on this dilemma suggested that the project shouldcontinue. One colleague from work who is not a member of CARN and one mem-ber of the audience at the Athens conference presentation thought that Jill’s contin-uing inclusion was unethical. The former suggested that the default position shouldbe to exclude Jill. My own position at the beginning of the timeline sequence ofevents was that the project itself was too difficult to evaluate ethically and that Ishould cease. It seemed as if the educational material had been obtained and to seekmore ran the risk of causing unnecessary distress for the participants. I found itvery difficult to equate emancipatory work with harm. It did bring to mind, how-ever, a report from a colleague who had once attended a conference on Theatre

506 S. Mee

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

Forum presented by Augusto Boal. Theatre Forum addresses oppression and helpsto identify ways of challenging that oppression. A member of the audience had saidthat challenging oppression had harmed some participants. Boal’s reply was thatchallenging oppression is, by definition, dangerous and some people will beharmed.

Puchner and Smith (2008) discussed the ethics of a research project in whichtalk was being analysed for racist discourse. The participants were not fully awareof the purpose of the research:

… the potential benefits of the information outweigh the need to fully respect theparticipants’ right to truly informed consent. (Puchner and Smith 2008, 426)

My work does not have such direct examples of manipulation but it might be arguedthat, because of lack of understanding, Jeffrey and Jill might, for example, not thinkabout why I focus on certain stories, why the student nurses are involved, the truenature of worldwide access to their information on the Internet or who the audienceis at conference. The manipulation might arise from their cognitive impairment.

It is clear that this project has produced some rich and lasting learning forstudent nurses and others. As an educator this has been a constant justification forthe project, and the power of this learning is more fully discussed in Mee (2010). Itis the case, however, that this agenda is mine and not that of Jill or Jeffrey.

Making sense of the ethical issues

In considering the key issues of practice, praxis and power I will be utilising aframework offered by Kemmis (2009). He describes action research as somethingthat leads to transformation in the way that the practitioner does practice, thinks orspeaks about practice and relates to others in that practice. Action research shouldlead to change in that practice. He goes on to suggest that a unitary praxis holdsthe three together and underpins practice. This praxis comprises living the doing,saying and relating. The three aspects are inter-related and none have priority.Praxis may be summarized as ‘morally informed action’ (Somekh 2006, 29) thatcombines critical reflection and moral action.

Kemmis and Smith (2008) suggest that practice architectures shape praxis. Theyform mediating preconditions for praxis. These architectures are threefold:

• Cultural discursive preconditions, which affect thinking and saying.• Material and economic preconditions, which affect the doing.• Socio-political preconditions, which affect relatings.

This offers a structure to aid understanding the unfolding of this project.Pre-existing cultural and discursive assumptions that have underpinned this

project are based in the domains of professional, educational and anti-discriminatoryand emancipatory politics. They are:

• The expectation that I will have a greater degree of control because ofestablished relationships and the assumptions about difference in cognitivefunctioning.

Educational Action Research 507

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

• Facts about people with a learning disability will be freely available asassessment or stories.

• People with a learning disability are other. They will need support because oflack of capacity.

• Professional discourse including protection and speaking for others.• A personal long-term aim has been to enable people with a learning disabilityto find their own voice.

• Students can learn from people who have been oppressed. To what extentdoes this carry the cultural imperialism of anthropology?

Puchner and Smith (2008) describe how being torn between two objectives pre-sented ethical challenges. These include conflicting cultural and discursive assump-tions. Puchner and Smith draw upon the example of Truman Capote, whobefriended a condemned murderer in order to get data for his book. He went on tofame as a writer. Puchner and Smith were using family members as a data sourcefor research and chose to end the project after due consideration of the ethicaldilemma this presented, having the two objectives of research and being grandpar-ents to the research partners. In my own case the split is between three interlinkedcritical objectives. The first is educational; to provide the best possible learningexperience for students in my role of university lecturer. In respect of power this isthe source of my income and may be the objective I have consequently placedcentre-stage. The second is political; to attempt to reduce the possibility of oppres-sive ‘care services’ existing in the future. The third is scholarly; to research thelived experience of people with a learning disability in my role of researcher. Thereis a further split in my relationship with Jill and Jeffrey: the professional and per-sonal. Historically there has been a professional relationship (I managed Jeffrey’smove from the hospital to his current home in 1986) and I also consider myself afriend to both. Also there is the collaborative nature of this project. In a piece ofresearch that attempted collaboration with school children, Cox and Robinson-Pant(2008) suggested that there is a professional legal and moral imperative for teachersto remain in control with low expectations of school children. These suggestionsoffer some parallels with my own situation. Jill and Jeffrey are not children but bydefinition there is a difference in cognitive abilities and decision-making experienceand I carry with me similar imperatives.

A key aspect of this shift in material and discursive conditions is that there wasa transformative shift in thinking, saying and consequently doing. Somekh (2006)wrote of having the experience of entering Wonderland in her research. This anal-ogy is taken from Lewis Carroll’s Alice in Wonderland in which Alice enters aworld in which power shifts away from herself towards formerly powerless thingssuch as a rabbit and playing cards. This analogy suggested a transformativemoment. In Somekh’s case this was when she realized that the children she wasteaching would have a better educational experience if they had the power to directtheir own learning. This is similar to the idea of a paradigm shift in respect of oneof the elements of praxis described above (Kemmis 2009). The two Wonderlandmoments in my own developing understanding were:

• Seeing my position of power on video for the first time.• Seeing the out-takes that demonstrated Jill’s discomfort.

508 S. Mee

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

I have been involved in enabling the voice of people with a learning disabilityto be heard in both education and professional practice since 1986. (See UTP4 fora video of an early example.4) I had produced more of this type of work than othersin the department and I would have been considered to have an expertise arisingfrom this experience. This discursive aspect had probably been internalized by me;I was indeed pretty damn good at helping people to find their voice! During theconference described in stage 2 of the timeline, I was aware of Jill being unhappyat one question I asked, but I felt sure I had ‘rescued’ the situation in the moment.It was only when I reviewed the video at stage 3 that I really noticed what appearedto be a haunted look in Jill’s face.

When this project was first introduced to our course over 10 years ago therewere significant questions about its usefulness. Initially there was refusal to providefunding. One comment was that ‘lecturers are paid to do the lecturing’. Since thattime I have experienced a significant shift in material and economic preconditionand the cultural discursive preconditions. The project is now supported withresources of time and money. This change occurred several years ago but has beengiven a significant boost by the NMC audit that is described above. The projectappears to have shifted from being a fringe activity to one that others wish to emu-late. Part of the cultural shift is that they too may be subject to audit in the future.The NMC brought in the current professional discursive pre-conditions that place‘user voice’ at the centre of educational provision.

Reflections on power

Throughout this article I have used the term collaboration to describe the way inwhich I engaged with peers at the CARN conference in the process of makingsense of the ethical issues, as well as the way that I work with the members of theoral history group. A significant issue for Puchner and Smith (2008) was to whatextent the project should be collaborative. They conclude that full collaboration isthe desirable ethical position, citing Zeni (2001). The fact that I have retainedcontrol over the collating of the contributions and the writing of this article raisesdoubts about this claim. There is, by definition, a difference in intellectual capacitybetween us. I am able to write this paper at a level that is beyond the capacity tounderstand of my partners in this project. I have chosen how much, and in whatstyle, to pass on to them as regards the contents of this article. I would also suggestthat the act of reading articles such as this places the reader on the more powerfulside of the dichotomy. Are we, the writer and the reader, colluding against the leastpowerful?

Bray et al. (2000) suggest that collaboration carries historical baggage as adescription of the activity of people who work with oppressive rulers in periodssuch as Nazi occupation. This thought caused me to reflect on the nature of Jill’s,and indeed everyone else’s, participation in the oral history project. Many of theaccounts given by people who lived at the Royal Albert include experiences ofoppression. Those who tell the stories know that I was a member of staff there andtherefore positioned as one of the oppressors. When one considers historicalaccounts of collaborating with the oppressor – for example, nurses who actively‘euthanased’ people with a learning disability (Benedict and Kuhla 1999;Friedlander 1995) – some of the reasons given were straightforward and evenprosaic. For example, it was easier to do as asked when those asking were more

Educational Action Research 509

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

powerful. It was best to avoid possible negative judgement. Perhaps Jill and theothers ‘go along with it’ after a lifetime of learning how to keep out of trouble byagreeing. They may be collaborators in this sense.

There is also a problem of power in the process of managing the oral historyprocess. Ellertson, Gustafson, and Salo stated:

When entering a social establishment the action researcher inevitably becomesinvolved in and affects the power relationships between the persons interacting in thecontext in question. (2008, 295)

Control of the space in which the stories are recorded is problematic. The relatingshave been formed in a long history of environmental and interpersonal inequalitybetween me, Jill and Jeffrey. It is significant that the suggestions from CARNmembers above included handing over control of the space entirely. Control of theagenda within that space was also suggested.

The focus on particular stories is an issue. I choose the stories that I think ‘work’.I know which stories have evoked a response in the students and form the basis oftheir essays. I can be heard prompting them in the video. Similarly Jeffrey and Jillknow the stories that get a response. These have become rehearsed but they alsoknow which stories I am likely to prompt them to say. The stories that produce theresponses are about ‘difference’ such as being abused, being crowded and not seeingfamily, for example. Indeed, the student assessment for the module in which oral his-tory is used at the University of Cumbria requires that this difference is explainedusing social theory. This work could be seen as emphasizing ‘difference’ in this way.We seldom talk about ‘sameness’ as it would not make the same point nor would itmeet the curriculum requirements to explain difference. This inevitably means thatthe picture is distorted. We are focusing on the history of difference, with theunpleasantness that goes with it, and largely ignoring the history of sameness andpossible pleasantness. To what extent is the oral history project voyeuristic?

Kemmis also suggests that practices take place in ‘dense interactions betweenpeople’ (2009, 466). For my project, the dense interactions have been significant atall stages. My relationship with Jeffrey Fardon and Jill Ward goes back to the mid-1980s professionally. Over the last six years we have known each other through theoral history group.

A second aspect of ‘dense interaction’ is the way in which my understandingof the ethical issues raised by the project as a whole, and the out-takes inparticular, has been developed in collaboration at the CARN conference inAthens 2009.

Is the project ethical?

An important ethical question is whether action research is worth doing (Puchnerand Smith 2008). Do the benefits justify the costs? Feedback from the collaborationwith CARN members suggested:

The ethics of a project is an ongoing process in constant flux. Requires constant moni-toring.

Impossible to come to an absolute conclusion about what is ethical. One cannot fore-seethe consequences of what one does.

510 S. Mee

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

The ethical dilemmas arose out of being stuck. I was not sure where to go next butthese problems emerged in a phase of quite rapid development of the project inwhich new and risky activities were being undertaken. In retrospect it is as if theproject had gained a momentum and a life of its own. This period of reflection hasraised several issues that had been present in the project but only came to consciousand detailed consideration as a result of this exercise. How have my thinking, doingand relating changed as a result?

It feels appropriate to ‘fence off’ the information we already have for educa-tional purposes. This aspect has been a demonstrable success but it does not needfurther input from the oral history group. However, this does not mean that therewill be no further input. I would argue that by de-coupling the educational objectiveit would be easier to focus on the individuals in the group. They may, of course,choose to continue meeting the students.

I have more respect for Jill’s resilience and the way that she has continuedsupporting the project despite the cost to herself. In the immediate future I mustproceed with extra caution concerning her involvement. She has a long involvementwith the project and to leave it may have problems in its own right. Considerablecare must be taken to give her time to make up her mind and to attach conditions.She may, for example, prefer the more social settings and to prepare a list of storiesshe is happy to discuss that day. It might also be the case that presenting the newfilm will be a good experience for her.

I must be more conscious of my power. All of the suggestions concerning ame-lioration of this power that came from the collaboration are worth pursuing. Now theissue has been highlighted, lessons can be learnt from other projects where there hasbeen success in handing over power. The fact that these suggestions all felt difficultprobably says something about the extent to which the professional discourse iscentre-stage for me. One aspect of this discourse is ‘protection’ and the related ideaof ‘doing no harm’, and the following comments from the collaboration with CARNmembers are a useful non-disabled analogue concerning Jill’s inclusion:

An acid test is ‘would it be ok for anyone?’

Life is difficult. Choice is difficult.

Most of us change our minds and we are not sure what we think about things.

We have very mixed feelings about our lives and events particularly when in transitionwhich may apply to Jill.

Exploring these ethical considerations in this way has freed up this action researchfrom a position of being stuck.

Prior to the start of this story I believed the work was ethical but, with somesense of shame, I realize that due to the very slow emerging of this project, and myongoing friendship with Jill, I had never really asked the question in a systematicway. I think it is significant that the project had emerged from a fairly informalreminiscence group in the 1980s. The course at the University of Cumbria adoptedthis established group, which then went on to evolve. At what point would it havebeen appropriate to ask the ethical questions anew?

Educational Action Research 511

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

Summary

In this paper I have attempted to understand whether my work in oral history canbe seen as ethical. A research partnership between an academic and people whohave been marginalized, and who have a perceived lower status is, by definition,based on inequality. I bring not only this status to the process, but also a historicprofessional relationship with the other participants. An uncomfortable truth, andcompounding factor, is that I bring a greater cognitive capacity to the process. Ialso bring to the process an agenda as an educator that my partners do not necessar-ily share. From this role as educator I get academic and pedagogical benefits.

The utilitarian advantages of this process emerge in transformative learningreported by the students who experience the oral history project. The social justiceis manifested in those students if they go on to become nurses who are less likelyto practice in oppressive ways.

Exposing the dilemma posed by one participant expressing distress in (what shebelieved to be) private to peers in CARN has resulted in a complex yet instructiveethical framework with which to guide my practice.

The question still remains; is my work ethical? The conclusion would appear tobe, somewhat ambiguously, ‘it depends’. Judgement is made in the sense of‘nomadic ethics’ described above. The devil appears to be in the detail, and what isethical at one time may not be at another.

Postscript

Jill chose to exclude herself from the project in November 2009. She did, however,request that I still ask her if she wanted to be involved when I carried out furtheroral history activities. In April 2011, to my surprise, she chose to become involvedagain. This session involved viewing the film and then fielding questions from thestudents. Jill became tearful at the start of the film (UTP1). After the film she statedthat she was happy to see the parts of the film with her and Jeffrey talking but shegot too upset when she saw the picture of the Royal Albert at the start of the film.

In recognition of their outstanding contribution to teaching and learning, Jeffreyand Jill have been awarded Honorary Fellowships by the University of Cumbria.

This article is dedicated to my father, Dr Graham Mee (1932–2009).

Notes1. UTP1: http://www.unlockingthepast.org.uk/plugins/file_manager/files/sm_test_01.html

(accessed April 19, 2011).2. UTP2: http://www.unlockingthepast.org.uk/index/independent_pages/view_independent_

pages/1/ (accessed April 19, 2011).3. UTP3: http://www.unlockingthepast.org.uk/plugins/file_manager/files/sm_test_02.html

(accessed June 1, 2011).4. UTP4: http://www.unlockingthepast.org.uk/index/archives/view_archives/60/ (accessed

April 19, 2011).

ReferencesAtkinson, D. 2004. Research and empowerment: Involving people with learning difficulties

in oral and life history work. Disability and Society 19, no. 7: 691–702.

512 S. Mee

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014

Benedict, S., and J. Kuhla. 1999. Nurses’ participation in the euthanasia programs of NaziGermany. Western Journal of Nursing Research 21, no. 2: 246–63.

Bray, J.N., J. Lee, L.L. Smith, and L. Yorks. 2000. Collaborative inquiry in practice. Action,reflection and making meaning. London: Sage.

Cox, S., and A. Robinson-Pant. 2008. Power, participation and decision making in theprimary classroom: Children as action researchers. Educational Action Research 16, no.4: 457–68.

Eilertsen, T., N. Gustafson, and P. Salo. 2008. Action research and the micropolitics inschools. Educational Action Research 16, no. 3: 295–308.

Friedlander, H. 1995. The origins of Nazi genocide. From euthanasia to the final solution.Chapel Hill, NC: The University of North Carolina Press.

Jillman, M., J. Swain, and B. Heyman. 1997. Life history or case history: The objectificationof people with learning difficulties through the tyranny of professional discourse.Disability and Society 12, no. 5: 675–93.

Kemmis, S. 2009. Action research as a practice-based practice. Educational Action Research17, no. 3: 463–74.

Kemmis, S., and T.J. Smith. 2008. Enabling praxis: Challenges for education. Rotterdam:Sense.

Lather, P. 2007. Getting lost. Feminist efforts toward a double(d) science. Albany: StateUniversity of New York Press.

Mee, S. 2010. You’re not to dance with the girls: Oral history, changing perception andpractice. Journal of Intellectual Disabilities 14, no. 1: 33–42.

Nursing and Midwifery Council. 2009. Programme monitoring report. Department ofNursing and Midwifery, University of Cumbria, Lancaster.

Pearce, C. 2009. On the significance of not knowing where you are going: Nomadic ethicsin educational research. Submitted, unpublished.

Puchner, L.D., and L.M. Smith. 2008. The ethics of researching those who are close to you:The case of the abandoned ADD project. Educational Action Research 16, no. 3: 421–8.

Robinson, C., and M. Kellet. 2004. Power. In Doing research with children and young peo-ple, ed. S. Fraser, V. Lewis, S. Ding, M. Kellet, and C. Robinson, 81–96. London: TheOpen University/Sage.

Somekh, B. 2006. Action research: A methodology for change and development.Maidenhead: Open University Press.

Wolfensberger, W. 1972. The principle of normalisation in human services. Toronto:National Institute on Mental Retardation.

Zeni, J., ed. 2001. Ethical issues in practitioner research. New York: Teachers CollegePress.

Educational Action Research 513

Dow

nloa

ded

by [

Uni

vers

ity o

f O

tago

] at

14:

53 0

4 O

ctob

er 2

014