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‘Mad pride’ began as a way to reclaim the stigmatising identity of being labelled as a ‘mad person’. This eventually branched out into academia and has since developed into a discipline of its own. Service-user researchers tend to value lived experience over traditional academic research values such as positivism, objectivity and neutrality. This poses a threat to mainstream academia and inevitably disrupts the status quo within these settings. Due to our experiences, service-user researchers may be the first to call out oppressive and exclusionary practices, enabling the critique of dominant discourses in traditional mental health research settings (Harding, 1991). From my own experience, traditional researchers can become defensive and, in turn, service-user researchers can be labelled as ‘problematic’ or ‘subversive’.

      In addition to navigating complex workplace dynamics, there are many values that service-user researchers bring into research settings that are not easily reconcilable with elitist, hierarchical, non-democratic institutions such as universities. From experience, it is evident that some service users prioritise what is best for the movement, in which case an ‘activist’ identity overrides a ‘research’ identity. This is in direct contrast to the competitive and individualistic culture fostered and perpetuated by mainstream academia. As a fellow service-user researcher wondered, how can there be any solidarity among us when it matters so much whose name is first on the next research paper? By its very nature, the research context can undermine solidarity and collective identity. Some service-user researchers (e.g. Nicki, 2016) have managed to avoid these dynamics by examining and publishing purely autobiographical accounts of their own experiences of ‘madness’ and systemic oppression.

      Pause for reflection

      Do you think people with lived experience should always be included in mental health research? If you have your own experiences of mental distress, how might you draw on these while doing your own research in this area?

      People with mental health difficulties are frequently vocationally disadvantaged by the lack of adjustments and understanding within the workplace (Shaw Trust, 2018). As a person who experiences distress consistent with post-traumatic stress disorder, it is more acceptable for me to say that I require time off work for a physical health problem rather than because I have experienced repeated nightmares and flashbacks for the past two weeks and have reached a point of mental exhaustion. Despite the protections offered under the Equality Act 2010, people with mental health problems remain heavily stigmatised in the workplace (Walton, 2003; Sainsbury Centre for Mental Health, 2007). Many service-user researchers, like myself, work part-time or on temporary contracts. We are excluded from more stable opportunities due to stigma and the episodic nature of mental distress. Additionally, there is currently no formal career progression for a ‘service-user researcher’.

      Despite the issues surrounding service-user research, the idea that ‘mad’ people could work in mental health academic contexts would have been unthinkable 30 years ago. This progress is to be celebrated. We have begun to reclaim mental health knowledge production.

      We still, however, have a long way to go as Sarah Carr, a well-known service-user researcher, explains:

      20 years later, does PPI merely serve to give a tokenistic competitive edge to nonuser-led academic studies, with patients and service users basically being positioned as factory hands in the psy industrial research complex? Are we marketable commodities? If so where does this leave service user and survivor researchers in academia, who want to be principal investigators, create new knowledge, have clear critical standpoints and may be grounded as activists in the service user and survivor movement? Does PPI as it is now constituted in England mean we shall always be the bridesmaid, but never the bride?

      (Carr, 2019, p. 1143)

      Conclusion

      The service-user movement encompasses a variety of individuals who have an array of experiences and identities. Although the movement began as a way of collectively resisting oppressive psychiatric practices, it has since evolved into something much broader. This includes the legitimisation of survivor knowledge as a distinctive epistemology, not merely in opposition to dominant discourses of psychiatry but as a unique discipline.

      You may have lived experience of mental health difficulties yourself. Learning how to use these in a therapeutic context can be of enormous value. Taking time to understand your own distress is an essential part of becoming a skilled helper. As this chapter maintains, it is only by speaking out about our mental distress that we can begin to break down some of the social stigma attached to mental health issues.

      It is important to understand the contexts and struggles endured by many people who have been through the mental health system. It is important that practitioners engage with service-users’/survivors’ experiences, including by taking an active interest in current mental health activism. This improves practitioners’ skills, making them more attuned to their clients’ needs and, ultimately, more effective in their work.

      Further reading

       The following text is an excellent resource for anyone wishing to go into the helping professions. It contains chapters written by both survivors and non-survivors, which all critically explore the role of mainstream psychiatry in mental healthcare:Watson, J. (ed.) (2019) Drop the disorder! Challenging the culture of psychiatric diagnosis. Monmouth: PCCS Books.

       This book provides a good summary of some of the issues around using lived experience in research and of being a service-user researcher:Sweeney, A., Beresford, P., Faulkner, A., Nettle, M. and Rose, D. (eds.) (2009) This is survivor research. Monmouth: PCCS Books.

       Romme et al. have produced a collection of first-person accounts of recovery from mental distress associated with hearing voices. It provides an interesting alternative perspective on schizophrenia:Romme, M., Escher, S., Dillon, J., Corstens, D. and Morris, M. (2009) Living with voices: 50 stories of recovery. Ross-on-Wye: PCCS Books.

      References

       Barak, A., Hen, L., Boniel-Nissim, M., and Shapira, N.A. (2008) ‘A comprehensive review and a meta-analysis of the effectiveness of internet-based psychotherapeutic interventions’. Journal of Technology in Human services, 26(2–4), pp. 109–160.

       Barr B., Taylor-Robinson, D., Stuckler, D., Loopstra, R., Reeves, A. and Whitehead, M. (2016) ‘‘First, do no harm’: are disability assessments associated with adverse trends in mental health? A longitudinal ecological study’, Journal of Epidemiol Community Health, 70(4), pp. 339–345.

       Bartlett, A., Smith, G. and King, M. (2009) ‘The response of mental health professionals to clients seeking help to change or redirect same-sex sexual orientation’, BMC Psychiatry, 9(1), p. 11.

       Basset, T., Faulkner, A., Repper, J. and Stamou, E. (2010) Lived experience leading the way: peer support in mental health. London: Together for Mental Wellbeing. Available at: https://www.together-uk.org/mental-health-resources/research (Accessed: 5 February 2020).

       Bedei, C. (2016) The mental health zines filling the gap that therapy doesn’t. Available at: https://www.dazeddigital.com/artsandculture/article/32004/1/the-mental-health-zines-filling-the-gap-that-therapy-doesn-t (Accessed: 20 January 2020).

       Beresford, P. (2003) It’s our lives: a short theory of knowledge, distance and experience. London: Citizen Press in association with Shaping Our Lives. Available at: https://shapingourlives.org.uk/wp-content/uploads/2015/03/ItsOurLives.pdf (Accessed: 5 February 2020).

       Beresford, P. (2013) Beyond the usual suspects, towards inclusive user involvement. London: Shaping Our Lives.

       Carr, S. (2019) ‘‘I am not your nutter’: a personal reflection on commodification and

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