Diagnóstico del sistema de gestión comunicacional, aspectos y variables que

Since the emergence of the trans social movement in the 1990s, trans patient groups in the UK have sought to change the landscape of healthcare provision, particularly in the context of gender identity services. Persistent concerns have included the long waiting times and strict management of patients associated with the gender clinics, as well as the high prevalence of cisgenderism and transphobia within wider health services (Burns, 2006; Davy, 2011; Women and Equalities Committee, 2016). In many senses this has been quite an isolated struggle, with few formal links existing between trans patient activists and other patient movements. Nevertheless, a number of the tactics by which trans patients have pushed for change resemble those pioneered within other patient movements.

Stephen Epstein’s (1996) account of the AIDS movement in the United States shows how a complex and multifaceted range of interventions from various patient groups came to influence the operation of medical science. AIDS activists involved in these interventions sought to challenge policies, practices and/or the provision of services in a range of contexts, including medical school curricula, clinical trials and the development of potential cures. The aims and tactics of different activist groups varied considerably, but their actions generally reflected a distrust of traditional medical experts and shared an urgency that reflected the scale of the epidemic. Many of these activists therefore sought to establish themselves as credible authorities on matters of medical research and care, leading to a large-scale ‘conversion of [people] from ‘disease “victims”’ to ‘activist-experts’ (Epstein, 1996: 8).

One of the many issues addressed by early AIDS activism was that of perceived paternalism on the part of medical institutions. A number of individuals and groups argued that traditional medical approaches worked to undermine patient agency.

181 Activists […] would exert a demand for greater patient autonomy by

challenging medical authority from two directions at once. On one hand, they would insist that patients interested in trying experimental drugs should have the right to assume risks rather than endure the benevolent protection of authorities. On the other hand, they would criticize certain approved and accepted research methods, like trials in which some patients received placebos, characterizing them as unethical for subjecting patients to unfair risks that the patients did not want to assume. (Epstein, 1996: 190, emphasis in original)

Numerous trans activists similarly argue that gender clinic policies and practices need to reconsider the role of consent in regards to their interactions with patients. In the below example, Michael Toze – a trans advocate and PhD student in Health and Social Care at the University of Lincoln – offers a nuanced assessment of how the gatekeeping system can work to deny patients the opportunity to take responsibility for their own care or offer properly informed consent.

Assessment procedures in clinics are not transparent and not consistent, and patients are aware of this through informal discussion. For example, Nottingham GIC recently sent new patients a form asking them what video games they play. It is not clear why this is relevant to their assessment or care, and if it is relevant, why other clinics are not asking. Some patients suspect this data was collected for a research study, although if so, no informed consent was sought […].75 _{Some clinics ask patients highly}

personal questions about sex; some ask if patients have gay relatives; some have refused treatment for people who are full-time carers and hence unable to work. Other clinics do none of these things. Because clinics control access to treatment, patients do not feel empowered to challenge being asked irrelevant and highly personal questions, or having judgements made about their lives. (Letter: Michael Toze, Written Evidence submitted by

Michael Toze to the Inquiry into Transgender Equality, data.parliament.uk,

17/07/15)

75 _{The findings of this study featured in a poster presentation at the 2016 WPATH Symposium.}

The abstract for the poster states that: ‘[o]ne hundred trans people attending the Nottingham Center for Gender Dysphoria were invited to complete the Video Gaming Questionnaire as well as a battery of questionnaires measuring levels of psychopathology, including depression and anxiety’ (Arcelus et al., 2016). During the latter stages of supplementary data collection I encountered a number of trans patients at Nottingham echoing Toze’s claim that the gender clinic did not adequately seek informed consent. These patients felt that they were required to complete the questionnaire as part of the clinic’s registration process.

182 Toze describes his submission as written ‘in a personal capacity’ in spite of his stated role ‘undertaking PhD research on LGBT health’. However, even as he contributes to the inquiry explicitly as a trans man – and hence as a service user, or ‘patient’ – he draws on an extended and sophisticated knowledge of the UK’s medico- legal landscape in crafting his response to the Transgender Equality Inquiry. Moreover, Toze’s submission is structured like a formal report, with an ‘executive summary’ at its head and his recommendations broken into clearly titled sections and numbered points. Toze was later quoted and cited repeatedly in the eventual report produced as part of the inquiry (Women and Equalities Committee, 2016: 37, 44, 48, 61, 62). In this way, he successfully asserts himself as an ‘activist-expert’ (Epstein, 1996: 8), drawing upon established professional norms of communication to establish his credibility.

In the rise of the kind of ‘counter-expertise’ exemplified by Toze, David Hess (2004: 697) identifies ‘a historic change in the epistemic status of the patient’. Hess argues that this has resulted in wider changes to medical professions and associated research communities. In the context of trans health, this assertion is reflected in the claim that a paradigm shift has taken (or is taking) place amongst gender identity specialists (Bockting, 2009a; Nieder et al., 2016). Hanssmann (2016: 124-125) argues that ideological changes within gender identity services are being driven by ‘insider- providers’ – practitioners who are themselves trans – as well as patients, ‘lawyers, and activists [who] increasingly shape policies and protocols’. Hess (2004: 703) describes interventions by insider-providers as the ‘direct form’ by which medical science might be shaped. Toze’s contribution as a patient and activist is an ‘indirect form’ of intervention, sitting amongst ‘contributions to the media or to engagement with the policy process and funding decisions’ by members of a social movement or advocacy group ‘who have developed the appropriate literacy to engage the policy and funding communities’ (Hess, 2004: 703).

This chapter focuses primarily on the collective role of trans people from different backgrounds and within different arenas who engage in both ‘direct’ and ‘indirect’ forms of ‘activist-expert’ intervention. Drawing on Madelein Akrich’s (2010) account of health-oriented activist mobilisations on the Internet, I regard the diffuse network of trans patients engaging in this kind of activism as a lay ‘epistemic community’: that is, a collection of individuals and groups amongst whom complementary forms of knowledge and expertise circulate. The term ‘epistemic community’ was originally coined by Peter Haas (1992) in order to describe specifically professional networks who draw upon a shared knowledge base to shape public policy. In this sense, the

183 specialists who work within NHS gender clinics might be said to comprise an epistemic community. Akrich (2010) argues that the extensive epistemic work done by health activists within online communities – through sharing personal stories, collecting and disseminating personal and scientific evidence, and presenting cases for change to authoritative bodies – means that they are effectively a lay body performing a similar epistemic function to a professional body. However, it is the professional communities that typically wield authority on the basis of their knowledge. This means that lay epistemic communities:

have no hegemonic position in the elaboration of public policies. On the contrary, they appear as opposing forces facing professional epistemic communities and reopen the range of possibilities, which professionals tended to limit and keep under their control. (Akrich, 2010: 11.1)

The body of this chapter therefore explores how epistemic communities comprised of trans patients and their advocates might challenge professional authority. I show that a range of tactics are employed to this end within a variety of contexts. Activist- experts (Epstein, 1996) and insider-providers (Hanssmann, 2016) can both play a key role; however, I argue that the specifically trans knowledges from which they draw are emerge ultimately from the (initially) non-authoritative, everyday ‘expert’ knowledges that circulate within trans spaces on the Internet.