Ethically reflexive research practice

As a community worker, researcher and deaf woman I am politically motivated. I believe that society can be a more inclusive place for diverse bodies to flourish in and I believe that research can and should assist this. This research is carried out with a ‘goal of social transformation” (Harris et al., 2009: 108) If I did not believe in this I would not have carried out this research. I have already argued that it is important that I do not leave a gap in our knowledge and dominant, normative discourse around vulnerability unquestioned and unchallenged in chapter one, and two. We must think differently and do differently when it comes to audist/ableist ideas that are embedded in discourse and policy and this research aims to contribute to both.

My commitment to this as a community worker and a deaf woman is bound up with the ethical approach that I have taken in this research – the respect I have towards participants. It is also bound up with the approach I have taken in this research, by

“follow(ing) research guidelines developed by the community themselves” (Harris et al., 2009: 113). This relates to the deaf framework I embedded in this research and particular steps I took around informed consent and confidentiality and other elements of the research which are addressed in this section.

Clandinin (2006) urges us as researchers to do more than just fill out the required ethics forms for our institutional ethics boards. I sought to act in ‘responsible and responsive’

ways in this research at all times, towards the dignity and well-being of participants

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(Wang and Geale, 2015). It is imperative in ethical research to commit to ‘doing good’,

‘doing no harm’ and maximising benefits - beneficence (Harris et al., 2009) and adhere to the fact that this obligation can “supersede the goal of gaining new knowledge through research” (MU, 2019: 7) . Feminist, disability and deaf scholars have a strong reflexive approach to ethics and I borrowed heavily from their insights in building my ethically reflexive approach to researching intimate lives.

Young and Temple (2014: 57) consider that there are two issues in relation to doing deaf related research. Firstly, “failure to understand population-specific issues means that research practices might well be unethical in their application in specific contexts;

and secondly, lack of awareness of the culturally mediated nature of fundamental ethical principles including informed consent, anonymity and confidentiality”. This means that components of ethical research, such as gaining informed consent, are not simple ‘box ticking exercises’ but one that must be culturally mediated.

As the authors note, deaf people are a highly heterogenous group. This was the case in my research – some participants identified themselves as having different levels of literacy. During recruitment I addressed this by delivering information on my research project through an ISL vlog, as well as written. I discussed participating in this research with some participants face-to-face beforehand and secured initial consent this way through ISL. Others were contacted through email or Facebook messenger, but these participants generally identified as having higher literacy. Some contacted me on Facebook messenger after seeing my ISL vlog on Facebook and wishing to participate.

This meant that there were a range of capacities within this research. I sought to include such a range of capacities and not to exclude “certain kinds of d/Deaf people” which Young and Temple (2014) note can happen in deaf related research and make invisible the realities of some deaf people. To exclude certain groups of people is unethical and can contribute to dangerous hegemonic discourse that can further marginalise those who have been traditionally unrepresented (Harris et al., 2009). As a community worker, embedding values of participation, empowerment, equality, collectivity and anti-discrimination in this research was crucial and I worked to do so through a number of practical steps as detailed in the following paragraphs.

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I strove to make this research participatory and empowering in different ways. Firstly, I sought to build a research advisory group at the beginning of this research. This was not successful. I contacted and spoke with deaf women who have an interest in research, in this topic and contributing to knowledge. It became clear that those who I spoke to were happy to contribute their ideas at the beginning but were not in a position to commit to an ongoing group. As a community worker and ethical researcher, I was conscious that participation must be voluntary, and to be mindful of any perceptions of coercion to participate, however unfounded. This was an additional issue to be cognisant of, for example when participants were recruited through their personal contacts. Here, I ensured that information was provided to the potential participant on the research and I gained their informed consent before proceeding to interviewing as detailed in section 4.8.1

From my initial attempts to build a research advisory group I realised that one-off interviews were going to be most successful. There is an extra dimension to this which also shaped my decision not to commit to a ‘pure’ version of narrative inquiry but rather to be inspired by and draw on aspects of narrative inquiry. Thus, I made this research accessible in terms of carrying out one-off interview that provided a “switch in modalities” (Young and Temple, 2014) from the written to signed or spoken and the formal to informal. In this way I created conditions for participating in this research.

This also had implications in terms of the process of generating knowledge with participants. While the interviews provided an invaluable space to generate knowledge through a conversational partnership with participants, I am aware that co-producing knowledge can be formally recognised as requiring multiple engagements with participants to work through their data. Yet, as Young and Temple (2014: 60) note, universal ethical principles should be culturally mediated. We must understand “the implications of universal ethical principles through a Deaf cultural lens”. Each interview took three-four days to transcribe. To return to 29 participants three or four times with heavy transcripts would have been extremely challenging. Firstly, managing this volume of transcribing would have been extremely time consuming and beyond my capacity as one researcher with an extremely limited budget. Secondly, it would have put some participants in a disempowering position if I asked them to work with me

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closely on the (re)presentation of their stories in written form considering the literacy issues I have noted.

It would not have been ethical, in my view, to put participants in this position and to do so would conflict with the importance of making this research empowering and anti-discriminatory, a crucial aspect of this research design that was informed by my stance as a community worker. A number of participants may not have been able to participate without this research design. I worked with participants around issues of anonymity and confidentiality in their transcripts and negotiating the data to be used but did not wish to ask them to contribute further than this. This may have been possible if I had worked with a small number of participants who had a good level of English and a greater ‘fund of knowledge’ regarding academic commitments and I had access to a research assistant who was also an interpreter. However, that would have excluded other deaf women from this research and further marginalised voices that are so rarely heard and as a community worker it was crucial that I moved from the individual and particular to the collective experience through the steps I took. For example, some participants may not have participated if I had included an interpreter. There is a small body of interpreters in Ireland and it is possible that participants would know them personally and would feel uncomfortable sharing private topics in front of an interpreter they use for their education or employment. As Young and Temple (2014: 58) write, “that fundamental issue of heterogeneity has a range of implications for ethical research practice”.

Additionally, I sought to do an exploratory piece of research, to carry out the first piece of research on this topic in Ireland and desired to speak to a range of women from different social locations to develop a broader understanding of the issues contouring the intimate lives of deaf women in Ireland. This approach also embedded the community development principle of collectivity in the research design. Thus, I sought to interview a larger number of participants than is usually typical in narrative inquiry.

These objectives thus shaped the methodological decisions I made and methods I chose.

I view this research as the start of something bigger and began with collecting a wide array of stories which is the primary obligation of a community worker (Ledwith, 2011). From this there is the potential, in conjunction with deaf women I have built relationships with through this research, to build solidarity with other deaf women

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outside of this research around the issues arising from the study and to look at the potential for collective action. This has led to a positive story which is important.

Young and Temple (2014) point out there is the considerable issue of “credibility”

which Harris et al., (2009: 112) contend is connected to the integral issue of ‘cultural competency’. They define this as “related to the researcher’s ability to accurately represent reality in culturally complex communities”. Cultural competency is built through reflexive practice and working alongside and learning from members of the community one is engaging with. The researcher must have “trusted or verifiable cultural competence to engage in research alongside, with and for deaf people” (Young and Temple, 2014: 64) and this enhances the validity of the research. This is also related to building rapport, which is an essential skill of any competent researcher. Before this research commenced, I spent two years building my relationships in the Deaf Community. I furthered this at a formal level through sitting on the board of two deaf organisations and at informal level through building friendships with deaf people, volunteering as a youth worker in a weekly deaf youth club and attending cultural events such as plays and talks and mingling with deaf people from different backgrounds.

I have built up my credibility over this time evidenced through being approached by deaf people to join three other deaf committees/boards, positions which I had to decline due to time commitments. Singleton et al., (2015) state that building rapport with participants shows respect for them personally. As researchers we must be mindful of how we build rapport in small communities and strike a balance. My approach was to build rapport through being involved in community activism such as being a member of Deaf Community Together for Yes, a deaf campaign group⁴⁹ that communicated accessible information to deaf people on the Repeal the 8^th campaign. I also have a presence through responding to posts on deaf social media sites and attend deaf social events. Through all this I built rapport and even if I did not know one deaf person personally, they trusted the recommendation of another deaf person and met me on this basis. Some also knew my face from meeting and casually chatting with me at deaf events. All this was an important commitment to building cultural competence and

49 See Facebook Group – ‘Deaf Community Together for Yes’ for further information.

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rapport. Importantly however, this was not always to further my own research, but I wanted to make friends and I liked the people I was engaging with. I value these friendships and seek to maintain them. This is my own DEAF-GAIN; BENEFIT. I am not ‘leaving the field’ after this research but will maintain my friendships and connections.

This also means that the boundaries are blurred but I maintained them and will maintain them through ensuring I never divulge anything to do with my research beyond overall findings. I never indicated that someone participated in my research, even though some participants did divulge that they took part. For example, at a dinner one participant discussed our interview and what she got out of it and how interesting it was. This put me in an awkward position where I did not want to respond to anything personal, she stated so I chose to sit and listen and nod along. It also brought up another issue.

Participants divulged information about other deaf people to me in interviews, people whom I will and do encounter again. It was important that I manage this – which Young and Temple (2014: 71) describe as “keeping information confidential from myself” and ensuing it does not impact my relationship with other deaf people. This required a process of “forgetting” this information.

Shakespeare (1997) has pointed out a concern associated with researching and presenting disabled people’s sexual lives. He highlights that such research can potentially be used in voyeuristic ways by researcher and readers. Liddiard (2013: 3) found tension in her research between accessing the data and “by enabling disabled people to speak about their sexual lives and subjecting their lived experiences to a lack of privacy experienced throughout public and private life; thus, serving to objectify their sexual selves and desires”. With this in mind there were considerable ethical concerns attached to my research and the ethics of researching intimate lives.

I have discussed the philosophical and pragmatic aspects of challenging vulnerability in the previous chapters. Here, I critically challenge the idea of inherent participant

‘vulnerability’ regarding ‘sensitive’ research. As discussed, ‘vulnerability’ is a contested concept (Brown, 2015) and I found it problematic to apply this concept to participants and have addressed my reasons for this in chapter two. This is not to say that I should not be accountable and follow the principal tenets of ‘do no harm’ and

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minimising risk to participants. However, all participants in research are vulnerable, my participants were not vulnerable because they were deaf. At all stages this research was committed to minimising any risks to participants by virtue of their participation in the study. I did not do this through a lens of protecting ‘vulnerable’ participants but because this is good, ethical research.

I built a supportive environment through careful, sensitive questioning that minimised the risk of being unnecessarily intrusive. I took participants’ lead on how far I could or could not probe into their experiences and regularly checked in to ask if it was okay if I asked certain questions. I reminded them they did not have to answer anything they did not wish to, and I remained alert to the need to move on from any topics of distress. An additional risk to be cognisant of is maintaining confidentiality. There are risks that participants can be identified from the research. In two cases I felt that I could not maintain confidentiality if I included details about incidents that happened to two participants. In both cases I felt it was best to exclude these particular narratives. This was important in order to adhere to the principle that ‘doing good’ must come before gaining new knowledge. Thus, there are harms and risks associated with this kind of

‘sensitive’ research. However, these can be and should be managed to ensure deaf women are at the forefront of knowledge production and to acknowledge the

“preciousness and power” of participants’ narratives (Liddiard, 2018).

Related to the ethical issues of this research and its ‘sensitive’ nature, I must be accountable to participants. Firstly, I was available through email and social media. I made it known that participants could contact me at any time. I asked participants how they felt about me doing this research and included that in this methodology. I took a cautious approach towards (re) presenting stories and ensuring I was purposeful with this. I sought to honour participants’ stories as faithfully as I could, to ensure stories were represented and thus understood with as much accuracy as possible.

Finally, as Aluwihare-Samaranayake (2012) details, it is important to be cognisant that participants abilities to change their circumstances may be constrained due to cultural, economic or political domination. In this context, as a researcher, I have a responsibility to contribute towards achieving social justice. On this basis participants deserve more than “respect, courtesy and honesty. They have a right to the social power,

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empowerment and emancipation that comes from the rising knowledge” (Aluwihare-Samaranayake, 2012: 66). This relates to the process of dissemination that I discussed under section 4.3.1. I will go beyond disseminating the research back to participants and work to disseminate this information at policy and academic level.