Learning from lived experience will help us better engage with diverse communities on human rights issues, says an expert from UNSW Arts, Design & Architecture.

Prioritising the lived experience of marginalised communities will enable more equitable access to human rights services, says Dr Maree Higgins from UNSW’s School of Social Sciences. The intersectional nature of the issues faced by people from refugee, asylum-seeking and migrant backgrounds means a top-down approach can compound their disadvantage, she says.

“Migration, particularly forced migration, creates unique psychosocial vulnerabilities that bring individuals, families and communities into contact with human rights services,” says the social scientist and refugee rights advocate. 

“However, too often the voices of people from migrant and refugee backgrounds are absent from planning and policy and programs. We need to understand and incorporate community ways of knowing, being and doing to promote a socio-culturally responsive approach to human rights.”

By establishing community-led and evidence-driven standards for ethical co-research we will ensure our approach is appropriate, respectful and accountable to marginalised communities, she says. 

Dr Higgins researches the human rights priorities of people from culturally and linguistically diverse backgrounds, people living with disability, older people and other marginalised groups. The UNSW academic and social work alumna is collaborating with Dr Atem Atem from the NSW Refugee Communities Advocacy Network and local and international partners to identify best-practice guidelines in community-based participatory research. 

Dr Atem is from a refugee background. His family fled South Sudan during the Second Civil War, seeking refuge in Ethiopian refugee camps. When Ethiopia was liberated by rebels, they returned to escalating violence in South Sudan before finding their way to Kenya in 1993 with thousands of other displaced persons. In 2002, he relocated to Australia through its Humanitarian Program.

At the end of 2022, 108.4 million people were forcibly displaced worldwide due to persecution, conflict, violence, human rights violations or public order disturbances. A very small proportion are resettled as refugees each year (114,300 in 2022) in countries such as the United States, Canada, Sweden, France, the United Kingdom, New Zealand and Australia.

Australia has a history of successful permanent resettlement of refugees and a strong network of dedicated torture and trauma recovery services, Dr Higgins says. “Service providers play a leading role in the International Rehabilitation Council for Torture Victims, informing international norms regarding psychosocial rehabilitation for refugees in resettlement,” she says.

“Unfortunately, Australia is also a world leader in legislating and enforcing restrictive, punitive immigration policies for people from asylum-seeking backgrounds who arrive by boat.” 

These policies have harmful impacts on people from asylum-seeking backgrounds. “[Acknowledging this,] we need an approach to human rights that is deeply attuned to diverse socio-cultural constructions, that is holistic, justice-oriented, and informed by expertise from below,” she says. 

“By harnessing the lived experience and cultural expertise of people from refugee and migrant backgrounds, we can enhance [each person’s] power and autonomy; promote individual, family, and community wellbeing; facilitate safe and effective intercultural interactions; and advance principles of social justice.” 

“Research has demonstrated the invisibility of refugee communities and their absence from public planning and policy spheres. There has been a lack of attention to intersectionality... Failing to acknowledge this can exacerbate existing social injustices and create new ones.” 

While co-research in refugee studies continues to enable more inclusive research, it does not sufficiently unsettle the imbalance of power embedded within colonial structures, Drs Atem and Higgins say. “The absence of formal guidelines for co-research with people from refugee backgrounds further exacerbates this situation.” 

Dr Higgins and colleagues critique current ethical standards applied to refugee research, highlighting key principles of ethical practice that are often overlooked. They conducted workshops with researchers from Syria, Bosnia, South Sudan, Vietnam, Afghanistan, the United Kingdom and Australia.  

“The research found that recognising relationships and witnessing and documenting people’s perspectives are fundamental to respectfully and effectively engage with people from refugee, asylum-seeking and migrant backgrounds on human rights issues,” Dr Higgins says. “These issues are integral to conducting ethical co-research.” 

The significance of this cannot be understated, she says; “it upholds survivor agency and enables truly collaborative meaning-making through dialogue”. As Esther Mujawayo, a survivor of the Rwandan genocide describes it, bearing witness enables “a social space, within which survivors can negotiate, and eventually reclaim, the meaning of their survival and assert the demands of the traumatic aftermath they face”. 

Recognising relationships emerged as integral to inclusive human rights-informed care. “Within relationships, we can notice and address power fluctuations that are so often ignored in refugee studies through practices that are reflexive, human, and accountable to individuals and communities from refugee backgrounds,” Dr Higgins says. “We need to be cognisant of the rich wisdom and diverse social dynamics [within these communities].” 

Dr Atem and Dr Higgins are interested in how lived experience can challenge academic institutions and academic norms. Dr Atem describes his social reality as deeply rooted in his experience of Dinka culture.  

“[In my community] lived experience has to be experienced collectively for it to make sense,” he says. “An individual’s private experience of the world has little currency… The collective process of learning about reality is underpinned by communal values, morals, and ethical principles.” 

Drs Atem and Higgins argue that it should no longer be acceptable to provide mediated accounts of lived experience in the academy. “Lived experience that is presented second-hand generally illustrates hardship, trauma, and struggle,” Dr Higgins says. “Experiences are often decontextualised … rather than reflecting the concerns of people from refugee backgrounds.” 

“When narratives of struggle do not acknowledge and address underlying structural disadvantages, these communities are cast as vulnerable,” Dr Atem says. “This permits paternalistic, patronising, and potentially coercive stances in co-research that belies the resilience evidenced in migrant and refugee communities”. 

“[Such an omission leaves] little room for alternate narratives, and what matters most to people is readily obscured. Thus, power and representation should be considered when documenting and disseminating knowledge about people from refugee backgrounds.” 

Drs Higgins and Atem have written a book chapter featuring stories about their research experiences, reflecting on uncertainty and messiness. Exploring the implications of these experiences together led them into new conceptual territory.  

“It is important to engage with the messiness and ambivalence of – rather than sanitising – lived experience,” Dr Higgins says. Dr Atem agrees: “Reflecting on uncertainty and messiness was valuable as it emphasised the disproportionate influence of western models of research in our work.” 

Lived experience authorship should also be complemented by other strategies, such as co-presenting in diverse environments and forums, that honour lived experience-led scholarship beyond the page, the research found.  

The intersectional disadvantage of disability and refugee background

Dr Higgins has also used co-authorship models with people from refugee and asylum-seeking backgrounds with lived experience of disability to critique and inform disability services. 

“Research has demonstrated the invisibility of refugee communities and their absence from public planning and policy spheres,” she says. “There has been a lack of attention to intersectionality... Failing to acknowledge this can exacerbate existing social injustices and create new ones.” 

Dr Higgins is part of a research team examining engaged advocacy. Mr Mahmoud Murad, one of her co-researchers, came to Australia from Syria as a refugee. After facing difficulties navigating available services, Mr Murad launched a website of resources and services to help other people from refugee backgrounds living with disability.

Learning from Murad’s and others’ lived experiences is integral to making service delivery more equitable, Dr Higgins says. The research, awarded the Multicultural Health Communication Award 2023 for Excellence in Communicating with Refugee Communities, focuses on reducing stigma and increasing access to information, supports and complaints mechanisms for people with disability from culturally diverse backgrounds.

“Through continuous and inclusive dialogue, we documented Murad’s lived experience in both Arabic and English, then advocated for its publication in both languages. This enabled wide dissemination of Murad’s story of engaged advocacy,” she says. 

“Lived experience needs to be given greater weight in policy development, service provision and planning. It is simply inadequate to provide services if people do not know how or where to access them.”

Lead image: adamkaz, Getty Images.

This article was originally published in 2024.

Written by Kay Harrison
Senior Lecturer in Social Work Maree Higgins
Senior Lecturer in Social Work