“TYPES OF BARRIERS EXPERIENCED BY PEOPLE WITH LIVED EXPERIENCE ”

I wish for a world that views disability, mental or physical, not as a hindrance but as unique attributes that can be seen as powerful assets if given the right opportunities” – Oliver Sacks

Power Imbalance

People with Lived Experience working with social service providers are affected by their position within a “distributed field of power relations” (Davies, Gray & Butcher 2013). When working with social service providers, people with lived experience paradoxically work within the very system in which they may have had negative experiences (Davies et al. 2014). Accordingly, people with lived experience value compassion and flexibility within service structures (Davies et al. 2014; Nannen 2015).

Existing social service systems often do not facilitate the inclusion of lived experience roles. Organisations often do not recognise lived experience “as a professional capability" (Gray et al. 2017). Consequently, people with lived experience uncertainty regarding their value and face distrust from their non-lived experience colleagues due to a lack of professional identity (Cleary et al. 2018; Davies et al. 2014). For example, when Nannen (2015) explained her lived experience qualification for working as a PSW in the mental health sector, she was scrutinised by colleagues. She hopes that the nationally recognised Certificate IV Mental Health Peer Work qualification will reduce this scrutiny. Recent research on the Australian forensic mental health sector revealed that people with lived experience are still widely considered service users rather than providers (Lambert 2021).

Resultantly, people with lived experience have mixed perspectives on sharing their lived experience expertise as consumer advocates in public forums, such as conferences and meetings (Davies et al. 2014). Although many people with lived experience view sharing their stories as empowering, some people with lived experience fear that in sharing their stories they would lose power over them (Davies et al. 2014).

Concerns around retaining power extend across the lived experience workforce. Furthermore, people with lived experience may avoid working with social services as they believe that they lack the skills necessary to contribute and that their status will not be respected (Davies et al. 2014). Consequently, although people with lived experience should be considered qualified because of their lived experience, some people with lived experience may feel the need to pursue legitimacy by undertaking higher education (Davies et al. 2014).

Social service providers express concerns about the skills of LEWs and the value and suitability of their involvement in higher-level decision-making (Bryant et al. 2008). As a result, many people with lived experience are insufficiently involved in decision-making (Cleary et al. 2018); although, some organisations successfully involve people with lived experience at all levels (Munns & Walker 2015). In research by Bryant et al. (2008), drug rehabilitation services reported that limited practical mechanisms support higher-level involvement of service users in staff decision-making.

Additionally, many lived experience positions are poorly remunerated (Cleary et al. 2018), negatively impacting the willingness of people with lived experience to participate in service delivery.

Interviews suggest that, generally, paid PSWs feel their expertise is more highly valued, while unpaid and/or under-resourced PSWs feel their contributions are unseen (Davies et al. 2014).

Relationship dynamics between people with lived experience and their non-lived experience colleagues are also an important consideration. PSWs have identified managers and supervisors who value lived experience expertise as important for embedding peer support work in existing service structures (Nannen 2015). Still, an analysis of PSWs’ activity logs by Jacobson, Trojanowski and Dewa (2012) suggests that PSWs are minimally supported by non-lived experience colleagues.

Relatedly, allyship between people with lived experience and sector professionals has been identified as important for the integration of lived experience in service delivery (Lambert et al. 2021; Scholz et al. 2020). In a two-day workshop aimed at producing recommendations to promote allyship in the forensic mental health sector, attendees emphasised the need for increased communications between different staffing groups about shared aims (Lambert et al. 2021).

Tokenism

People with lived experience can be subject to tokenism in social service settings (Davies, Gray & Butcher 2013; Lambert et al. 2021). Research on the social work and lived experience workforce in the Australian forensic mental health sector reveals concerns around lived experience expertise being undervalued and underappreciated in service delivery (Lambert et al. 2021).

Interviews with homelessness and mental health sector workers indicate that people with lived experience faced tokenism when they had been “asked to give input but felt their contribution had not influenced decision making”; “given positions on committees but not been asked their opinion”; “employed as an advocate but not treated as a professional”; and “told their input was valuable but had not been paid” (Davies, Gray & Butcher 2013).

The systemic marginalisation of lived experience expertise and related undervaluing and discrediting of LEWs has been referred to as epistemic injustice (LeBlanc & Kinsella 2016).

Stigma

The stigma against people with lived experience propagated by conventional professionals can limit the full integration and success of such persons (Happell et al. 2019). Happell et al. (2019) found that nurses who reported stigmatised views of mental health service users valued the input of people with lived experience least. Similarly, Bryant et al. (2008) found that drug rehabilitation service users faced barriers to meaningful involvement with social service providers as they were considered ‘lacking’ due to their illness.

Despite this, research by Davies, Gray and Butcher (2013) and Stott (2017 p. 1187) shows that service users are motivated to engage in community representation, advocacy, and peer support activities to challenge stigma. In doing so, some reported facing pressure to conform to simplified identities (e.g., “homeless”), whilst others reported avoiding group or representative modes of participation, which were viewed as simplifying and misrecognising their identities (Davies, Gray & Butcher 2013).