Ethics in practice

Next, I discuss what additional ethical considerations were key in this research – in other words, ethics in practice;

4.8.1 Informed consent

Prior to interviews, participants were sent information sheets about the research questions and their rights during the research process. This was followed by a face-to-face discussion (through ISL or English) immediately before the interview. During this time the camera was not switched on. Once the participant indicated their consent, I asked if I could turn on the camera to record.

Three options were provided to document informed consent. Firstly, signing a consent form. All participants took this option. Secondly, participants could give informed consent through ISL and a short video would have been made or finally, verbally on the tape or video recorder. Developing and ascertaining participant understanding of informed consent and the ongoing nature of informed consent was given careful consideration.

As Young and Temple (2014) write, there are extra considerations around the concept of informed consent with deaf people. Referring to Pollard (1998) they state that the concept of informed consent may not be familiar to some participants due to reasons such as, “having a smaller fund of knowledge and information in comparison with hearing people” (2014: 61). While the researchers warn not to place participants in a

‘victim or vulnerable role’ by automatically assuming a lack of knowledge it is wise to give time towards drawing out the concept of informed consent at the beginning of each interview.

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Drawing on evidence based best practice I adopted the following practices to ensure ongoing informed consent;

- I continuously checked for ongoing consent of participants by checking before, during and after interview

- I provided accessible written and signed information i.e. using suitable terminology and interpreting any written English information into ISL

- I ensured participants fully understood the purpose of the research, what would will happen with the data, how it would be stored and what would happen with the research

- I reminded participants that they could withdraw from the research at any time, including post participating

- I ensured participants had access to their transcripts and could alter them as they saw fit

No participants objected to the use of video recording when I checked for consent to recording. Before beginning an interview, I reiterated that if I asked a question that the person was not comfortable answering they could simply respond they did not want to answer. I also reminded the interviewee that if they mentioned something in the interview that they did not want me to document that was also their right.

4.8.2 Confidentiality

Protecting confidentiality through anonymising identifying details was a big concern.

The Irish deaf community is small, and confidentiality and anonymity were stressed by every participant. I had to find a way to address the objectives of the research, theorise across a number of cases and critically represent the complexity of participants’

experiences and positionalities (Clandinin and Huber, 2010) whilst also blurring identifying details. Therefore, bounded segments about particular intimate experiences are included in the analysis chapters. Where necessary I change details such as places, names and so on. A common concern across the literature dealing with ethics in social research with minority groups generally and in Deaf studies specifically is that of confidentiality. Meador and Zazove (2005) write that Deaf Community members, conscious of their privacy, may refuse to take part in research out of suspicion that their

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anonymity will not be preserved. It is recommended that clear phrases such as ‘no names’ are used to counteract any worries and reassure participants. This was noted with all participants as well as guaranteeing that other identifiers such as where they lived or worked would not be included. This is also key to my decision to use thematic narrative analysis in this research which allows for further anonymity.

4.8.3 Transcribing and anonymity

I am competent in, but I am not fluent in ISL. There is great complexity involved in the act of translation and a number of points in relation to this to explain. Firstly, I ran into some confusion in understanding three of my participants fully and I was acutely aware of the great risk of mistranslation of meaning in these cases. All interviews were transcribed from ISL or English into English text – thus I shifted from one modality into another (Young and Temple, 2014). While all participants were offered an interpreter, no participant requested one for interviews. Later I sought and secured permission from five ISL interviewees for an interpreter to transcribe our interviews. I also asked five English interviewees for permission for an English-speaking transcriber to transcribe our interviews. I returned to each participant and reiterated that I would like to employ a transcriber for assistance with their interview. This was noted at the beginning of our interview, but I wanted to ensure ongoing consent. All participants confirmed their consent. In effect there were four different transcribers (including myself) involved in the transcribing process. All transcribers signed confidentiality forms. This aspect of the research was approved through the MU Ethics Research Committee application. One ISL qualified interpreter and two English transcribers were employed by the MU Access Office. The ISL interpreter was employed from Bridge Interpreting – a sign language interpreting agency.

I transcribed the remaining interviews myself. Each took me three – four days to transcribe and was a complex process. Nevertheless, I found the transcribing process invaluable. It allowed me to further delve into and sit with the interviews, immerse myself in the data and draw out the common themes across the data. I ran into the issue of misunderstanding or being confused by some phrases and sought to clarify these by recreating a short video of the sentence (that omitted any identifying information) and clarifying meaning with a deaf person who agreed to support me in this process during

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the translation period. On reflection these interviews should have been carried out with an interpreter present and, if I repeated the process again, I would change how I approached these interviews. However, it is worth noting that including an interpreter in the room could also have impacted on the interview dynamic and the data collected. In relation to other interviews I took great care during the interview to work hard to ensure I understood meaning and in turn make myself understood (Young and Temple, 2004).

I sought to represent the meaning conveyed in each interview as accurately as possible.

This process required careful thought. I was aware of the limitations of my ISL to written English translation ability and sought to navigate this in a way that afforded participants privacy by ensuring I did not have to ask a professional interpreter to translate all the interviews but also ensure that I accurately represented meaning. I approached this complex issue by including reference to humour, gestures, laughter, pauses, silences and facial expressions and the meaning or tone that this conveyed within brackets. For example I referred to a participant rolling their eyes to convey exasperation or shrugging their shoulder to convey being dismissed.

It is important to clarify that this means that the structure of narratives differs across the analysis chapters. To convey that that some participants were using signed English or spoken English with me I followed an English grammatical structure. To convey that the interview was ISL and to assist with managing the impact of my limited ISL to written English translation skills I approached the translation by following an ISL grammatical structure as best as I could and including reference to gesture and tone to highlight the depth of feeling and nuance that the participant had conveyed.

This approach was followed less closely by the two English transcribers who only had an audio recording and thus included verbal cues such as pauses or laughs. I followed up on these interviews by re-watching the taped interview and documenting additional important visual contextual clues. In relation to the ISL interviews – it was necessary for the interpreter/transcriber to have access to the video given the visual modality of ISL. They followed English grammar and did not include the extra aspects of the conversation. My approach was to try and follow ISL grammar as best I could and to

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include deaf words (e.g. “Foo”)⁵⁰, gestures and facial expressions to hold as much life and meaning in the data transcription as possible. This followed interpretive and constructive epistemologies where attention is paid to how something is said in recognition that it is important how a point is constructed (Young and Temple, 2014).

Young and Temple (2014: 143/145) highlight that there are issues when “attempting to represent signed utterances in two-dimensional space (on paper) when in reality they occur in four dimensions” and “historically transcription has been a problem in studies where data have been collected in sign language”. Deaf academic, Ladd (2003) has cautioned researchers to be aware of these issues in translation. I returned transcriptions (and video recordings where requested) to all interviewees for their feedback, assurances of accuracy and the possibility for them to remove or edit information.

My re-presentation is imperfect. It raises dilemmas of how to navigate complex issues such as producing expression in written English. West (2013: 5) notes;

“the recording and re-presentation (by a hearing person) of stories told by, for and about, deaf people – whose history is arguably largely one of discrimination and marginalisation – is a methodological, epistemological and political minefield. It places issues of power, representation, cultural translation and conceptual equivalence firmly in the spotlight”.

I am a deaf person, but these issues of power and representation remain pertinent. I emailed transcripts to participants – some of which followed an ISL grammatical structure written in Deaf English, similar to “the English written and understood by Deaf BSL (British Sign Language) users that displays non-standard grammar and lexical choice but incorporates a Deaf cultural perspective with the English” (Stone and West, 2012; 659). One participant asked me to re-write the interview following English grammatical structure. The narrative presentation was negotiated in this way. Stone and West (2012) note that one must be mindful of presentation of sign language narratives, and think of the readership, losing something in the translation, as well as readers thinking this is simply poor English. The researcher must think carefully about what

50 This is noted in chapter 6 under 6.9: ‘Negotiating deaf embodiment in intimate moments – the labour and the pleasure’.

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their aim is when re-presenting interviews. My aim is to strengthen the representation of the diversity of language use, along with the depth of expression and embodied communication within interviews.

The importance of identifying the act of translation/interpretation is a key issue in literature exploring research with Deaf Communities. The final product of this research is published in English. This raises what Young and Temple (2004) call ‘hierarchies of language power’ – translation in this context is not a simple one of translation from one language to another but, in a way, “collusion with the historically oppressive significance of English in Deaf people’s lives” (Ackerman and Young, 2001: 186).

English has long been promoted as a ‘better way’ for Deaf people to communicate and sign language has been ignored as a legitimate language in which to learn and communicate. This has deep resonance for Deaf people. Unfortunately, it is not possible to publish this PhD in ISL given the practical requirements of the traditional academic PhD. However, I will disseminate the research findings using ISL and clear, accessible English - therefore going someway to challenging this disempowering language hierarchy and committing to the principles of the Deaf research framework.