Chapter 1. Methods and Methodology
1.3 Practical Ethical Research Methods
While ethics are inseparable from the framework of my research, and have been discussed in detail above, it is also important to outline the specific, practical ways in which professional research codes of ethics have been met in the research. This research project passed two separate university processes of ethical review. It was approved by the University of Sheffield University Research Ethics Committee in 2012 and by the Department of the Study of Religions at SOAS, University of London in 2015, and is compliant with the ethics policies of those universities, and of the British Sociological Association (2017b).
1.3.1 Consent and access to information
University ethical codes often represent disabled people as particularly vulnerable. While it is certainly important to follow laws on informed consent in research, these are sometimes represented in university guidance in ways which may conflict with the social model or the emancipatory paradigm. I discuss the legal framework of the
28 Although healing is discussed in Chapter 6, there was no space to discuss significant material from
potential vulnerability of disabled people below. While no research participant is necessarily vulnerable, issues of vulnerability and risk in relation to consent for disabled people can be reduced, especially by using more accessible information about the research.
Informed consent to the research was given formally by all participants, accompanied by an information sheet (see Appendix 3). Participants who were being remotely interviewed completed this form by email, using a typed signature. One participant who could not write by hand also used a typed signature. One visually impaired participant gave verbal consent after the form had been read aloud to her, as did one older participant interviewed by telephone who did not have access to the internet. No participant in this study would be considered unable to consent under UK law. To assist members of the WAVE Church group with informed consent, a modified consent form and information sheet was created using a “simple words and pictures” format (see Appendix 3), and I explained the research to participants together with parents or carers. This simplified consent form was also useful for several of the second-stage interview participants.29
1.3.2 Anonymity, confidentiality and ownership of data
Power dynamics for disabled people within church contexts were a key driver for requests for anonymity. A number of participants expressed concern over
confidentiality and anonymising, particularly in relation to any criticisms they had of their churches. This was especially the case as many participants perceived that they were the only disabled people in their churches or their wider networks of Christians, or one of very few disabled ministers.30 Furthermore, the potential for some
participants to be identified is high: some disabled Christians in the UK are
beginning to form loose networks and communities, and some prominent members of these communities have been interviewed. This was a driver in the decision not to include full transcripts with the thesis and other additional anonymisation measures.
29 Several of the second-stage interview participants had moderate learning difficulties, including
some of those with autistic spectrum conditions. See Appendix 2, showing participants’ backgrounds.
30 This perception is not borne out by data, which suggests that there are significant numbers of
disabled Christians in churches, yet several participants felt that they were identifiable and that there were few other disabled Christians. This may suggest that not many participants were meeting Christians who identified as disabled, despite meeting legal criteria, or it may reveal something of participants’ own concepts of disability.
However, this contextually-driven need for anonymity was balanced with a desire from some participants to own their data and experiences. Reflecting this right to ownership of data, many asked for their first names to be used. Prioritising the right of disabled research participants to have control over how their data is used and presented, I have honoured this request, and I consider that participants should have the right to ownership and agency over data. I would have liked to have been able to offer to cite the full names of the participants in this project whose theologies are shared here, especially in the light of discussions in later chapters about disabled people and access to theology. However, this concept of ownership of ideas was difficult to balance with the need for confidentiality as outlined in research ethics guidance. I prioritised the requirements of the Data Protection Act (1998), given that sensitive data required enhanced ethical confidentiality procedures. In future books or articles arising from this study, I will be able to return to the participants and ask whether anyone would like to be cited with their full name in conjunction with the theologies and concepts which they shared during the interviews, after
transformation and detailed reconsideration of the data. 1.3.3 Use of digital and online research methods
As outlined above, a mix of digital and offline methods were used to reach and engage with participants at all stages of the study. In addition to debates about the quality of data obtained using online methods, discussed above, there are particular ethical discussions around the use of internet-based social research methods. Internet-based social research involves no higher risk than other forms of research, but the risks of research conducted online are different from those in other research settings (British Sociological Association, 2017a; Kraut et al., 2004; Trevisan and Reilly, 2014; Zimmer, 2010).
Consent is a key issue of risk where internet-based research takes place. No internet data collection methods were used without full consent of participants, using standard consent procedures, which mitigated some of these risks. However, consent issues precluded research into other data available online. As discussed in the
Introduction, there is increasing networking between disabled Christians using the internet, including blogs and Twitter. However, the BSA considers that personal data available on the internet should be treated with caution because of potential issues of consent (British Sociological Association, 2017a). I therefore did not use online
materials by disabled Christians, other than the blogs of a small number of disabled church leaders on the subject of disability, which were used as part of the literature review and following ethical citational practices.31
Further risks of internet-based interviewing included interactional differences between face-to-face and remote interviews (Illingworth, 2001), and acknowledged academic risks of the stigma of internet-based methods (Farrell and Petersen, 2010) which may affect how the results are received. These were mitigated, for example in my careful consideration of how to use the open Facebook group versus the
password-protected message board. Where some risks of using internet-based methods remained, I again chose to afford the “dignity of risk” to participants, weighing the risks against improved access for relevant participants. Trevisan and Reilly (2014) argue that there is no reason why disabled people should necessarily be considered more vulnerable than other users of social media in research. However, I considered that the use of data from social media might nonetheless affect the enhanced confidentiality procedures required for this project. For this reason, no interviewing or sharing of data took place via public social media. However, as described above, it was a central principle of the research that interviewing methods should be as accessible as possible to all, and for many participants, online methods allowed better access to the research.
I also gave thought to the ways in which I wrote about and marketed the research online. No names, pseudonyms or individual cases were discussed in the blog or Facebook group. Instead, general issues and findings were reflected upon there. After publication of the thesis, when reports and materials for churches will be shared via the research blog, participants will again have the opportunity to confirm that they are happy with their anonymisation there.
Given new General Data Protection Regulations (2018), in 2018 I asked recipients of the research newsletter if they wished to continue to receive it. However, participants had already given consent to be contacted directly about the research, through the research consent forms, which complied with new regulations.
As already discussed, this study’s activist and critical disability research methodology are particularly relevant to the research context of churches and
31 In the case of Ann Memmott’s blog posts, I obtained the consent of the author before referencing
theology and their approaches to disability. The theme of centring disabled people’s experiences and voices will recur throughout the thesis, as I explore how disabled people are represented in churches as objects of care and ministry, rather than as active agents of theology and service. To contextualise this theme, the next chapter examines some of the historical and current theological discourses of disability that were most relevant to my participants’ experiences.