FISCALIZACIÓN Y CONTROL DEL SISTEMA DE GESTIÓN

In the final section of this chapter, I discuss ethical concerns relevant to the undertaking of this project. In particular, it is important to consider the impact that social research might have on the individuals and communities it engages with: ‘[i]n a very real sense, every method decision is an ethics decision, in that these decisions have very real consequences for not just research design but also the identity of the participants, the outcomes of our studies, and the character of knowledge which inevitably grows from our work in the field’ (Markham, 2008: 251). Researchers have the power to define the terms of engagement with those they study, and disseminate information about them; we therefore ‘have a responsibility to ensure that the physical, social and psychological well-being of research participants is not adversely affected by the research’ (British Sociological Association, 2002: 2). In the final part of this section I discuss self-care, in terms of my ethical responsibility towards myself as researcher, as well as my institution’s responsibility towards me.

Responsibility to participants

My methodological approach raises a number of important ethical considerations. These include issues of consent, privacy, and authorship. The British Sociological Association (2002) has a number of recommendations about gaining consent from participants and anonymising their identities in order to protect their interests. Such considerations are particularly important in research involving trans participants for two central reasons. Firstly, even trans people who are ‘out’ on the Internet may be closeted or ‘stealth’44 _{in the offline world for a variety of reasons. Any action that might}

unwittingly 'out' a trans individual to family, friends, work colleagues or peers is likely to place undue stress upon their mental health and leave them open to discrimination and abuse (McNeil et al., 2012). Secondly, trans people are regularly misrepresented, misgendered and othered within research (Namaste, 2000; Serano, 2007; Ansara & Hegarty, 2012). As a result, trans people may be particularly wary of researchers’ aims and intentions.45 _{This, coupled with the relative vulnerability of trans participants – as}

44 _{‘Stealth’ trans people seek to move through the world without their trans status being}

apparent.

45 _{A blog post I saw shared on several occasions is Fuck You and Your Fucking Thesis: Why I}

Will Not Participate in Trans Studies. In the post, author Anne Tagonist (2009) argues that the majority of researchers looking at trans issues are ‘self-serving’ and cisgenderist, and that their research interests do not typically align with trans people’s needs. The post – along with a heated debate in the attached comments thread – reflects both the frequency with which trans

96 evidenced by exceptionally high rates of depression, self-harm, suicide ideation and attempted suicide (Whittle et al., 2007; McNeil et al., 2012) – means that researchers should be particularly sensitive to the privacy of trans populations.

At the same time, it is important to explicitly acknowledge the contribution of trans writers. Namaste (2000) argues that successive generations of trans people have effectively been silenced by social research: in contrast, I hope to amplify trans voices. I have therefore sought to openly name participants in instances where they have explicitly sought a public audience. This need not necessarily contradict a commitment to privacy: in the context of Internet research, a key issue for ethical consideration is whether or not any given text was conceived of by its author as private or as public.

I therefore adopted the following broad guiding principles for ethical engagement during fieldwork and the writing of this thesis.

 I would seek permission to acquire data from private spaces (including member-only communities such as the community forums, and secret Facebook groups).

 I would anonymise all data from these private spaces.

 I would not anonymise data from public spaces within the activist sphere (such as public blogs); instead, I would acknowledge each writer openly as the author of their work, in recognition of the public statement they sought to make through writing.

 I would not anonymise data from the practitioner sphere, as these documents and websites were produced as public discourse.

In practice, implementing the first two of these principles in particular was a complex process. As noted by the British Sociological Association (2002: 5), ‘[e]liciting informed consent, negotiating access agreements, assessing the boundaries between the public and the private, and ensuring the security of data transmissions are all problematic in Internet research’. This led to three issues that required careful consideration.

Firstly, while some spaces were very explicitly member-only or secret, and others were explicitly aimed at a wide public audience, the distinction between ‘public’ and ‘private’ was not always clear, particularly within the activist and community spheres. community spaces are approached by privileged, thoughtless and/or underprepared researchers, and the distrust that can arise from this.

97 For example, some of the sub-forums within a particular message board were specified as ‘public’, meaning that anyone could read content or post anonymously. Others required a membership profile with the forum in order for a user to read and post on them. This raised questions about the extent to which forum users paid close attention to which sub-forum they were posting on, and how best I could anonymise or acknowledge writers in different parts of the forum. Similarly, tweets to #transdocfail were visible to anyone who clicked on the hashtag – a matter that regular Twitter users would be aware of – but contributors were unlikely to expect their tweet to be picked up by a researcher. As Markham (2008: 274) notes: ‘[s]ome users perceive publicly accessible discourse sites as private’.

Secondly, anonymisation within social research typically entails changing the reported name of participants in order to protect their identity (Bryman, 2004). It is possible to argue that even this is not always necessary online, as Internet users frequently create pseudonyms when registering for membership of various spaces in order to manage their own privacy. However, there is a danger that any direct quotation from a social space online might attract undue attention regardless of pseudonym use, as readers can often uncover even ‘private’ locations in which conversations originally took place by copying the quote (or a section thereof) into a search engine (Kendall, 2002).

Thirdly, there were issues with consent. Seeking consent was complicated by the fluid membership and shifting activities of users within fieldwork sites in the activist and community spheres: ‘[o]nline discussion sites can be highly transient […] Researchers gaining access permission in June may not be studying the same population in July’ (Markham, 2008: 274). This, combined with the temporal peculiarities of the spaces in question, along with the sheer number of users present across multiple spaces within the field, rendered it impractical to directly seek permission from every individual whose writing is present in the data corpus for this project.

My solution to the above issues was to treat spaces with a predominantly private

function (such as the forums) as private, and spaces with a predominantly public

function (such as Twitter) as public. I further implemented a number of additional measures to seek consent and protect the identity of users.

I explicitly sought permission to conduct research within every private space visited for fieldwork. I posted on the forums and Facebook groups to state that I hoped

98 to conduct research within the space. I linked to a website created for the purpose of providing information on myself, my research aims and methods,46 _{provided my}

institutional contact details, and offered to answer any questions that potential participants might have. No-one took exception to my proposal to conduct research and I was not denied permission to conduct research in any of the spaces; however, I waited for permission from forum or group administrators before commencing data collection. In one of the two forums I was asked to restrict data collection to ‘public’ areas, so I limited my activities accordingly; I nevertheless continued to regard this data as ‘private’ due to the predominantly private function of the space.

I also sought explicit consent to reproduce all quotes from social spaces (e.g. forums, Twitter) that I use for illustrative purposes within this thesis (and within related external publications), regardless of whether or not I otherwise regarded that space as ‘public’ or ‘private’. This ensured that I addressed the important methodological issues raised by Markham (2008) regarding public discourse and shifting populations. I sent direct private messages or emails to relevant individuals in order to ask if they would be interested in participating in this project. If permission was denied or I did not hear back from the individuals in question, I did not use anything they had written.

I did not seek permission to quote from public blogs or media articles. However, I follow blogosphere etiquette – and seek to amplify trans visibility, where relevant – by openly naming writers and providing links to their articles in the bibliography of this thesis. I also provide a list of blogs in the appendix.

Where this thesis quotes from public spaces, I use the name or pseudonym chosen by the author. In this way, I aim to respect the choice made by the author in selecting a username that may have an important personal meaning. Where this thesis quotes from private spaces, I use a pseudonym selected by myself to protect the identity of the author. Some quotes (particularly those from public areas of spaces I have treated as private) have undergone small edits – with permission from the participant – in order to protect the author from discovery via search engine. When taking this step, I have sought to retain the intent, spirit and ‘feel’ of the original quote.47

I therefore sought to adopt a nuanced approach to the sensitive ethical issues that arose from my methodological approach. Applying a single, inflexible principle in

46_{https://transhealth.wordpress.com/}

99 matters of consent, privacy and authorship might have served to undermine the privacy and/or autonomy of participants. Instead, I adapted and responded to specific circumstances within different spaces in the field.

Responsibility to self

I spent a great deal of time contemplating the aforementioned ethical issues relevant to participants during the planning stages of this project, the fieldwork process, and the writing of this thesis. However, I would have benefited from better considering my ethical responsibilities to myself before entering the field. I would also have benefited from better institutional support at these times. I encountered a number of challenges that impacted significantly on my mental (and, to a lesser extent, physical) health during this project; challenges that in retrospect could have been better anticipated and addressed. I discuss this as an important methodological issue, but also aim to break the widespread ‘silence’ regarding mental health issues within university environments (Wynaden et al., 2014).

The British Sociological Association (2002: 2) guidelines state that: ‘[s]ocial researchers face a range of potential risks to their safety’, but there is no mention of the mental health of sociologists. There is a recommendation that ‘[m]embers […] consider carefully the possibility that the research experience may be a disturbing one’ (4), but the onus is upon the impact that this might have on participants.

There is, however, some discussion of these issues within feminist literatures. Sevaste Chatzifotiou interviewed participants resident in Greek women’s shelters for a project that looked at personal experiences of domestic violence, abuse and rape. She felt under-prepared for the impact that this had upon her own mental health. Her paper explains that the experience of data collection was stressful due to the empathy she felt for participants: ‘[l]istening to women's traumatic stories made me feel anxious and depressed’ (Chatzifotiou, 2000: 8.3). By contrast, Ellis (1999) carefully prepared Sylvia for the emotional difficulties of conducting research with other cancer survivors. In acknowledging the ‘pain’ that the project would entail and the ‘vulnerability’ it would require, Sylvia was empowered to carefully plan a study that accounted for these factors.

While coding my fieldwork diary, I was struck by the impact of the research on my own mental health. I was engaging on a daily basis with stories of transphobia and cisgenderism from medical providers and the mainstream media, as well as narratives

100 of hardship, anguish and internalised transphobia from research participants. The very act of managing my feelings while entering the field, analysing my data and attending research events became an increasingly difficult form of emotional labour (Hochschild, 1983), only compounded by my desire to maintain a ‘professional’ approach. These issues are illustrated by the following quotes from my fieldwork diary.

Just finished writing about the Trans* Health Matters48 _{stuff […] I feel}

slightly sick and wanted to cry at various points. I might do so now. (Fieldwork diary: 14/03/13)

I'm finding the process of this research extremely stressful simply because I keep having to confront and digest distressing stories on a daily basis. I'm considering […] accessing counselling for the [duration] of my fieldwork. If I don't have a way of handling the negative emotions I'm experiencing as a result of this I feel like I could cause myself a fair amount of harm. (Fieldwork diary: 25/03/13)

I found the overall experience of reading this conversation to be a distressing, upsetting one (Fieldwork diary: 26/06/13)

My ‘insider’ familiarity with the subject matter and the field meant that I empathised easily with participants’ stories. The topic of trans health was very ‘close’ to me as I began fieldwork, but feels even ‘closer’ at the time of writing. As this project unfolded, I myself changed GP practice following years of misgendering, and have seen numerous trans friends denied access to medical services, grow frustrated with waiting lists, and/or be refused trans-specific treatment. In particular, two trans friends (one of whom I lived with at the time) took their own lives. These experiences meant that posts written by distressed individuals within the community sphere were particularly hard to read.

When I'm already feeling emotionally vulnerable, the sheer level of anguish experienced by the people on the message board I'm looking at hits hard. I frequently shout at my computer or want to cry. There are some good stories but so much pain. I'm just reading a post by someone who is having a lot of trouble finding out what's happening with his surgery referrals and is so worried by it all that he's becoming physically ill. It all feels horribly familiar. I've already retreated to my bed and cried a couple of times today. (Fieldwork diary: 22/09/14)

101 I eventually became severely depressed, anxious and prone to panic attacks. In the wake of my housemate’s death in November 2013, I took several months off the project to focus on recovery. While I found my supervisor and a number of other individuals in my department (particularly other PhD students) to be very supportive, I felt isolated by the impersonal structures of the wider university institution, which are not well- adapted to support the mental health of academics. Chatzifotou (2000: 8.4) recommends that researchers dealing with difficult, emotional fieldwork and analysis participate ‘in sessions providing professional counselling’. However, I could not afford private counselling and was offered only three appointments by the university’s in- house service. There was no clear point of contact within my department for me to discuss emotional issues arising directly from my work.

I eventually gained access to counselling through a local charity in the spring of 2014,which helped me process both my bereavement and the wider mental health issues related to my work. Through these sessions, I also had the opportunity to consider the support that my institution could have offered. My counsellor informed me that she was expected to discuss issues of emotion and vulnerability arising from her work with her clinical supervisor. She expressed a great deal of surprise that the university did not have similar procedures in place for social researchers conducting ethnographies and/or qualitative interviews in the course of their professional duties. It was ultimately left to me to realise that I required mental health support, and arrange access to these services. Following a formal withdrawal from my studies, I eventually resumed fieldwork in the summer of 2014. Being more aware of my own vulnerability, I eased myself back into the project gradually. However, I still faced a number of emotional challenges, as evidenced in the above quote from my fieldwork diary dated September 2014.

It is also worth briefly examining the physical impact of the PhD on my body. I have previously noted how the Internet extends into the physical medium through the devices with which we access the online world. Regular use of these devices (for Internet use or simply for writing) without appropriate exercise and self-care can result in injury. Many of my PhD student colleagues swapped stories about back, wrist and neck problems due to frequent computer use. In particular, I strongly recall having to leave a departmental seminar on embodied research in the context of cross-Channel swimming due to the sudden, agonising onset of shooting pains in my lower arms; a consequence of many weeks of typing without adequate exercise.

102 I fear that the negative impact of this project upon my mental and physical health will be permanent. While I recovered from depression, I have experienced crippling anxiety on numerous occasions since this time. I also need to regularly monitor my computer usage and stretch my wrists in order to avoid pain in my hands and lower arms. Moreover, the emotional difficulties I encountered in undertaking this project ultimately worked to considerably delay the fieldwork process. In retrospect I could have paid better heed to issues of self-care during the planning stages of my PhD. I could have better acknowledged how ‘close’ I would be to participants’ negative experiences, assigned more time to the fieldwork process so I could spend fewer hours immersed in the field on an everyday basis, and accessed counselling services sooner. I also could have considered accessing physiotherapy.

However, I also believe that universities need to take greater responsibility for the wellbeing of researchers. Upon re-reading my PhD ‘Upgrade Document’,49 _{I note that}

there is no discussion of any ethical responsibility to myself. This omission was not remarked upon by the members of academic staff who scrutinised and interviewed me about the document. In an environment where the majority of academics report being stressed (Kinman & Wray, 2013), and with substantial anecdotal evidence pointing to