This two-part World AIDS Day series ties in with this year’s theme: “End inequalities. End AIDS.” The theme puts special focus on the growing inequalities in access to essential health services that affect millions of people – and not only in resource-poor countries. The ongoing COVID pandemic has clearly exposed social fault lines, and stakeholders are realizing that health interventions need to take into account systemic issues in local societies impacting their success. HIV still remains a major public health concern, with around 1.5 million new infections and 680,000 deaths in 2020 alone; and as long as social disparities, injustice and human rights in HIV prevention and treatment remain unaddressed, it is likely to remain a global health crisis. Our blog highlights the growing importance of understanding hope as a social construct that needs to be built into HIV intervention programmes.
Carmen Logie is the author of a recently published Springer book: Working with Excluded Populations in HIV: Hard to Reach or Out of Sight?.
Often when describing my HIV research collaborations with people navigating poverty, conflict, and human rights violations across diverse global regions I am asked by researchers how I maintain hope. This question continues to surprise me. I rarely encounter people I work with—including refugees, LGBTQ persons, and sex workers in rights-constrained contexts—who have stopped believing that change is possible. Hope is integral to their lived-realities and, what is more, hope drives solidarity efforts foregrounding that they can be part of this change. As a researcher, I document both inequities and the ways that people survive, respond, and resist to build the future they envision. Perhaps what researchers are really asking me, is how do we maintain belief in the possibility of change in the midst of persistent and widening social injustice?
I reflected on this question while writing the Springer book challenging the idea that people are ‘hard to reach’ in HIV research. Social injustices, particularly during the COVID-19 pandemic, are increasing, and in turn gains made in advancing HIV prevention and care are eroding. Yet hope is not only still possible, it is in fact necessary as researchers, activists, service providers and communities striving for social change. Why is hope missing for many HIV researchers?
Critical hope, as conceptualized by Brazilian theorist Paulo Freire, posits hope as essential in struggles toward social justice. Critical hope considers social and individual experiences of emotions, thought, love, trust, peace, humility, courage, and patience. Hope is an indispensable ingredient of social justice work. As Freire described:
“I do not mean that, because I am hopeful, I attribute to this hope of mine the power to transform reality all by itself, so that I set out for the fray without taking account of concrete, material data, declaring, “my hope is enough!” No, my hope is necessary, but it is not enough. Alone, it does not win. But, without it, my struggle will be weak and wobbly. We need critical hope the way a fish needs unpolluted water.” (1)
I stumbled across the concept of critical hope working on a community-based research project with transgender women of colour in Toronto, Canada. Initially developed as an HIV prevention project, we quickly learned that HIV prevention was not the most pressing need for these communities. The transgender women we had the privilege of learning from described the importance of centering self-love and self-acceptance in contexts of racism, transphobia, violence, and poverty. When people can realize self-love and acceptance, we were told, it would be easier to enact engagement in and navigate paths to HIV prevention and care. Reflecting on our arts-based project (2), participants shared their journeys from struggle to finding personal and collective hope and meaning as the first step in lasting well-being.
My HIV research talks over the past several months—often focused on HIV and intersecting stigma—have concluded with an invitation to consider and integrate critical hope in HIV research practices. In discussions afterwards, people have largely focused on this message of critical hope—despite it being on the talk’s periphery. People shared that critical hope is a new, or at least omitted, concept to them in HIV research and is desperately needed in the pandemic where the concept of languishing has come to the fore.
Perhaps critical hope is elided in HIV research due to a misconception that hope is an individualistic concept incongruent with social and structural forces that constrain opportunities for people to realize their potential. And indeed, there are approaches to hope that centre cognitive processes, affect, and behaviour, while others center spirituality and faith. There are also relational approaches that explore acceptance, care, and belonging as central to hope. Freire’s conceptualization of critical hope is both transformative and emancipatory—critical hope necessitates personal and collective risks and dreams in active struggles for social justice. Hope is not something that can be given in a top-down approach, rather embedded within and central to the human experience. Critical hope recognizes the power and beauty in the understanding that we are all incomplete beings in search for improvement. Black feminist bell hooks notes the importance of sharing both injustices and the ways in which solidarity and collective efforts have sparked social change:
“Both exercises in recognition, naming the problem but also fully and deeply articulating what we do that works to address and resolve issues, are needed to generate anew and inspire a spirit of ongoing resistance. When we only name the problem, when we state complaint without a constructive focus on resolution, we take away hope. In this way critique can become merely an expression of profound cynicism, which then works to sustain dominator culture.” (3)
Hope has in fact been central to historic community responses to HIV. This can be found in examples ranging from Herbert de Souza’s “The Cure of AIDS” (4) poem describing dreams for an HIV cure in 1994, to Simon Watney’s (2000) discussion of hope (5) as key to healing for people living with HIV, to the present day where Jessica Lynn Whitbread’s ‘Love Positive Women: Romance Starts at Home!’ Valentine’s Day campaign (6) generates grassroots gestures of love and caring for women living with HIV to advance deep community love and social justice. Critical hope is empowering and can foster solidarity, community bonds, trust, and care that advance reciprocity and new possibilities for justice and equity in HIV responses.
1. P. Freire, Pedagogy of Hope: Reliving Pedagogy of the Oppressed, 1992/2014, Bloomsbury Academic, p. 2.
2. See C. Logie, A. Lacombe-Duncan, Y. Persad, T.B. Ferguson, D.M. Yehdego, S. Ryan, M. Forrester, C. Moses, & A. Guta, The TRANScending Love Arts-Based Workshop to Address Self-Acceptance and Intersectional Stigma among Transgender Women of Color in Toronto, Canada: Findings from a Qualitative Implementation Science Study, Transgender Health, 4(1), 2019, https://doi.org/10.1089/trgh.2018.0040.
3. b. hooks, Teaching Community: A Pedagogy of Hope, 2004, Routledge, p. xiv.
4. H. de Souza, A Cura da Aids (in Portuguese), 1994, Relume Dumará.
5. S. Watney, Imagine Hope: AIDS and Gay Identity, 2000, Routledge.
About the contributors
Dr. Carmen Logie is Associate Professor at the Factor-Inwentash Faculty of Social Work, University of Toronto, is the Canada Research Chair in Global Health Equity and Social Justice with Marginalized Populations. She is an Adjunct Professor at the United Nations University Institute for Water, Environment & Health, Centre for Gender & Sexual Health Equity Research Scientist, and Adjunct Scientist at Women’s College Hospital. Logie’s research programme advances understanding of intersectional stigma and other social-ecological factors associated with HIV prevention, testing and care in Canada, Uganda, and Jamaica of people with HIV, refugee and displaced youth, LGBTQ communities, sex workers, Indigenous youth, and persons at the intersection of these identities.
About our guest contributor
Shinjini Chatterjee is Senior Editor, Social Science Books, Springer. She has been a social science publishing editor since the mid-2000s and has worked with Springer since 2012.