Voices from the Fringes to the Heart of Advocacy: Centring lived experience
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Voices from the Fringes to the Heart of Advocacy: Centring lived experience

Stories/229 , Issues/Mental Health , Issues/Disability , Issues/People of Colour , Issues/Homelessness
Melbourne VIC, Australia
18th May 2017
Voices from the Fringes to the Heart of Advocacy: Centring lived experience
Morgan explains why we need to stop othering those with lived experience, and let them lead the way.
“If you deny people a voice, their own voice, there is no way you will ever know who they were.” – Alice Walker
Artist: Jeanie Tomanek.
Artist: Jeanie Tomanek.

As someone who has sought the help of community services, I have grown more and more passionate about the need to have marginalised voices at the heart of advocacy, driving how "system reform" is shaped and spoken about.

When I was 21 years old, I left home. I wasn’t in a good place, mentally or emotionally – all I knew was that I needed space. I wanted to figure out how to get back on my path and clear my head of all the noise. I have accessed many services, for both my mental health and housing needs. Throughout this long journey, I documented my experiences and found much of the process of "seeking help" completely demoralising and dehumanising. Every time I accessed a service, I remember thinking, “Where are the people like me?” I felt so unsafe and so unseen. However, I do consider myself one of the lucky ones. I found a support system and fought hard to carve out a life that felt true for me, through my ability to articulate my experiences in speaking and writing. I ended up working and volunteering at some amazing organisations that respected and honoured my lived experience, and who have mostly worked alongside me. These experiences have shaped the ways I approach my own work and the people I work with.

This has all still come at a high cost, particularly to my health. I have learnt, through my own experiences, about the necessity of deep self-care and support as a community advocate. I have also realised how crucial it is to have voices that are traditionally unheard or dismissed being centred in our dialogues and philosophies in the areas of human rights and social justice. 

As a result of the top-down power dynamics that remain alive and well in our societies and models of support systems today, lived experience is still an undervalued and widely misunderstood tool in the space of community campaigning and system reform.

Those with less power are often still seen, and used, as the ‘faces’ of issues, such as homelessness - without any direct benefits to them for telling their stories. The late and great advocate, Stella Young, so aptly coined the term ‘inspiration porn’ as a way to describe the way people with disability were described and treated, “based on the assumption that [they] have terrible lives, and that it takes some extra kind of pluck or courage to live them.” Propping people up and using their stories to arouse feelings of pity or ‘inspiration’ in those without a lived experience of the same issue is in poor taste and can be incredibly damaging to the way those who have chosen to tell their stories see themselves, and also see those who paint them in ways that do not accurately portray their experiences.

One way of combatting this constant ‘othering’ is to support and enable the skilling up of those with a lived – experience to design, lead and create programs, services, campaigns and communications that speak to those who have had similar experiences. Although no group of people is ever homogenous, someone who has experienced homelessness, for example, has a better idea of how to engage and talk about the issues of homelessness than someone who hasn’t. Similarly, just because you’ve studied a certain issue, certainly does not make you an ‘expert’. What I have understood from my own community advocacy and from my many years working in the community sector is that nothing comes close to understanding an issue quite like lived – experience. The nuances, complexities and contradictions of living a certain issue are just never captured by those who haven’t lived it themselves. The ability to explain how a system must be navigated can never be accurately described by someone who has never had access to, or needed to rely on it as a means of survival.

Thinking about some of my dearest friends who are also community advocates, and those who I have had the pleasure of working alongside, I can’t tell you how enormous their contributions have been through their shared insights to help raise awareness about the issues they have experienced. One young man I have worked with for a few years taught me more than I would ever hope to teach him – a message that has been burned into my very being through his reflection, “homelessness strips you of your humanity and the only way to change that is through love. The more love you feel, the more feeling human restores how you feel about yourself.” By re-instilling humanity into issues that are often treated in such inhuman and damaging ways, we find pathways to ‘recovery’ and accepting our own realities as truth.

As people with lived experience increasingly campaign and offer their expertise, it is crucial that dignity is upheld and that the integrity of people’s stories remains intact. Although sharing stories can be a positive experience for many, it can also be extremely stressful. This is something we must remain aware of in order to support people in the best ways we can. The wider community sector must work to intentionally create spaces for others to explore freedom of expression and find an authentic voice, ultimately, led by those who know how it feels to need safer spaces than the ones they have been exposed to in the past.

If we are to change our world, we have to change who is designing its systems. This begins with supporting people to utilise their experiences and wisdom in authentic and meaningful ways that contribute to shifting the status quo, not merely being treated as‘informants’ or somehow lesser than. Experience is expertise in the same ways that degrees are.

It’s no longer about simply having a seat at the table. It’s about completely re-imagining and re-structuring the ways in which the tables exist. The system cannot be fixed by the system.

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