Allyship with people with lived experience

Mary O’Hagan, Executive Director, Lived Experience Branch, Mental Health and Wellbeing Division, Department of Health Victoria

About allyship

Allyship describes the sustained efforts by people with relative privilege who work in partnership with marginalised groups to advance their interests, equity and inclusion. The term emerged in the 1970s among social justice groups.

Critiques of allyship come from across the political spectrum. Right wing critiques reject ‘divisive’ identity politics based on marginalisation; they favour a focus on ‘individuals and local communities united under common purposes [and not] riven by groups based on sex, race, national origin, or gender—each with specific claims on victimization (Butcher, 2020).’ Some critics of allyship from the social justice world believe it is performative –it validates people with a saviour complex rather than the marginalised, and it is often conditional or transactional rather than reflecting a lifelong moral obligation (Owens, 2017). This could be a critique, not of allyship itself, but of allyship done badly. Good allyship demonstrates sustained effort driven by moral obligation.

The lived experience movements in mental health and alcohol and other drugs (AOD), particularly the mental health consumer/ survivor movement, are social justice movements. They arose because people with mental distress experienced social exclusion and loss of self-determination, and not the benefits of ‘individuals and communities united under a common purpose’ as promoted by the earlier quoted the oppression and cruelty by the bad people but the silence over that by the good people.” right-wing critique of allyship. The consumer/ survivor movement is founded on identity politics where a shared experience of oppression leads to affirming identities, liberatory worldviews and advocacy for social inclusion and self-determination. The movement has always valued good allies.

About lived experience

Lived experience is personal knowledge about the world gained through firsthand experience rather than through representations constructed by other people. It usually refers to challenging or traumatic life experiences that have had a direct impact on people. In the mental health and AOD contexts, lived experience includes people with experience of mental distress, suicidality and/or addiction as well as their families, kin and supporters.

Lived experience exists across the wellbeing-distress spectrum:

• All people and communities at risk of loss of wellbeing, distress or substance use problems (including people currently experiencing these) benefit from whole of government equity initiatives such as progressive taxation, welfare safety nets and free healthcare, as well as more targeted wellbeing promotion and suicide prevention and early intervention programs.

• People with moderately disruptive distress or AOD related harm may also benefit from primary mental health and addiction services.

• People with severely disruptive distress or AOD related harm may also benefit from specialist mental health and addiction services.

Traditionally, lived experience participation has been concentrated at the specialist service end of the spectrum but this is changing. It’s important to note that people with severely disruptive distress and AOD related harm tend to experience more marginalisation, based on their distress, than people further down the spectrum.

People with lived experience are a diverse and intersectional group. Lived experience includes people with direct experience as well as their families, friends or kin who may have separate interests and different perspectives. There is also a distinction between mental health and AOD lived experience, not just in terms of the raw experience but the responses from service systems, the types of discrimination experienced, and the focus of their respective movements. Finally, there are intersectional lived experiences – indigenous people, cultural and linguistically diverse people, age diversity, LGBTQI+, dual disability and others who experience intersectional marginalisation, sometimes within mental health and AOD lived experience communities. Not all lived experience is equal and as a rule the people most impacted need their voices to be the most amplified.

A framework to support allyship

“Partnership moves beyond traditional participation and engagement models and is built upon a platform of power sharing. It recognises that people with lived experience and communities are likely to have experienced extreme power differentials. Power-sharing seeks to remove these differentials and to address their adverse impacts on people’s lives.”

– inside out & associates australia

Since the early 1990s, Australian Commonwealth and State government policies have encouraged participation and engagement with people who use mental health and AOD services, and their families, in the design and delivery of services and systems. The International Association for Public Participation (IAP2) has developed a spectrum on the degrees of participation that reflects these policies – they are to inform, consult, involve, collaborate, and empower (IAP2, 2023). All these verbs, except for collaborate, imply a more powerful party is making decisions about the degree of participation of a less powerful party. The IAP2 spectrum and the historical government participation policies do not fully address marginalisation. It’s time to consider how we can move beyond participation and engagement. This was clearly signalled by the Royal Commission into Victoria’s Mental Health System when it stated, ‘the leadership of people with lived experience will be foundational to the new system’ and that they will be ‘central to the planning and delivery of mental health treatment, care and support services’ (State of Victoria, 2021). We are now moving to partnership –the coming together of two groups as equals, while maintaining their separate identities, to share perspectives and make joint decisions on matters of common concern. In today’s context good allies need to advocate for the transition from participation and engagement to partnership.

How to be a good ally

“You cannot declare yourself an ally because you don’t decide if you’re an ally, your actions do.”

– Hannah Litt

1. Acknowledge privilege and system harm

Those of us with relative privilege have often benefited from the same system that has harmed others. For instance, people who work in mental health have derived status, income and job satisfaction from the system, whereas people who use services have experienced loss of status, rights and opportunities, sometimes as a direct result of being in the same system. This can be an uncomfortable realisation, but relative privilege does not mean we are bad people. Acknowledging our relative privilege is the first step to good allyship.

2. Educate yourself on lived experience

World Views

Getting to know people with lived experience and understanding their world views is essential for good allyship. Spend time with people with lived experience who are colleagues, go to their events and socialise with them. Be open and curious. Ask questions. Show respect and maintain confidentiality. Absorb lived experience stories, writing, art and research with an open mind and heart.

3. Establish trust and listen to feedback

As you get to know people with lived experience, work at establishing trust with them, through demonstrating genuine and consistent allyship. Stay aware of the ‘emotional labour’ of carrying a lived experience perspective in a clinically dominated context. When you receive critical feedback from people with lived experience, listen deeply to it and take time to understand it from their perspective. Accept criticism as a ‘difficult’ gift and learn from it.

“Allyship is not a one-week performative act. It’s a lifetime commitment to educating yourself, listening to constructive criticism, learning from your mistakes, doing your research, and staying aware.”

– @femalecollective

4. Ensure lived experience is ‘in the bloodstream’

Understand your sphere of influence and use your knowledge and understanding of lived experience perspectives to apply ‘nothing about us without us’. Work with people with lived experience to promote partnership. Ensure people with lived experience are fully ‘in the room’. Do they set the agenda and the language? Are they visible and Continued next page