This series is hosted by FACE (the Focus Area for Compassion and Ethics) for sparking discourse and awareness through examination of provocative ethical questions in global health.
Overview
In our inaugural lunch & learn, we focused on stigma as a key ethical challenge in global health. Our colleagues at the Global Partnership for Zero Leprosy (GPZL) and Compassionate Atlanta shared their experiences with addressing stigma. Together, we explored:
- What is stigma and how does it interfere with achieving the goals of Task Force for Global Health programs and in the global health field more broadly?
- What are Task Force programs doing to address stigma, and what actions can we take to minimize stigma in our own lives?
- What grassroots efforts to address stigma are underway in Atlanta?
Key Learnings
- Stigma harms the individuals who experience it and the cohesion and well-being of the broader community in which stigma is present.
- Stigma is experienced across cultures, though historical/social context varies widely.
- Stigma is often intersectional, affecting individuals with multiple stigmatized identities (e.g., persons living with leprosy, those experiencing disability, and those belonging to certain ethnic minority groups).
- Stigma often results in exclusion from society, compromising belonging and safety. Stigma reduces access to care and can compromise the quality of the care provided.
- GPZL developed a stigma-informed advocacy training for NTD patient communities, drawing on the experiences of persons affected by leprosy.
- FACE will soon begin work to develop stigma-informed compassion training for healthcare providers caring for persons affected by leprosy in India.
- Compassionate Atlanta shared their efforts to highlight the stories of Black women storytellers who have experienced stigma in faith spaces. Read more here.
What We Can Do to Address Stigma
Addressing stigma requires a multi-level, holistic approach. At the individual and community levels, this may look like giving voice to personal stories, directly supporting persons affected—using the means or tools they identify as helpful and appropriate—and raising awareness of sources of stigma. At the societal level, exposing systemic discrimination resulting from stigma in education, employment, and healthcare is crucial for lasting transformation.
One important lever for reducing stigma at all levels is recognizing our own biases. Compassion requires us to ‘call in’ ourselves and our community members by reminding us/them of our values (rather than ‘calling out’ and generating more shame). Allyship, or accompaniment, enables us to stand alongside those experiencing stigma to advocate with them and show up in ways that restore dignity and respect.
Sharing Experiences & Efforts
Andie Tucker of GPZL spoke about the intersectional nature of stigma and how stigma distracts from treatment and healing. As individuals learn that the disease they suffer from has a biological cause, dispelling some social and cultural beliefs (e.g., leprosy is “a curse from God”), this knowledge often leads to significant relief, freedom, and restorative action. Greater awareness and education can help dismantle deeply rooted beliefs that result in stigmatization.
In collaboration with NTD-SC and FACE, GPZL has developed an advocacy curriculum to address stigma toward persons with Neglected Tropical Diseases (NTDs). The training is grounded in learnings from the leprosy community and is informed by persons affected. The story-based curriculum helps patient-advocates build knowledge and skills to advocate for the dignity and rights of those experiencing stigma.
Over the next two years, FACE will partner with NLR-India (until No Leprosy Remains) to develop a compassion-based training for healthcare workers that addresses stigmatizing biases. While compassion training holds great potential to diminish stigma, current offerings fail to directly address it. Phase one will focus on stakeholder engagement to understand local context and needs. Phase two will entail tailoring compassion-based training to be most appropriate and relevant. Finally, phase three will include training implementation, evaluation and refinement, and incorporation into India’s National Leprosy Eradication Program.
In their remarks during the lunch & learn, co-directors from Compassionate Atlanta, Iyabo Onipede and Leanne Rubenstein, reminded us that a commitment to compassion requires a commitment to racial justice, inclusion, and equity. “It’s impossible to have empathy for someone you don’t see as your equal,” said Iyabo. Often in global health, we operate under the assumption that we have the technical knowledge to solve problems and that those experiencing stigma should adopt the solutions we offer. Onipede underscored the necessity of viewing others as peers and the importance of a willingness to foster a space of mutual knowledge exchange. This is where healing can begin.
To illustrate the many forms of stigma experienced through an intersectional lens, Compassionate Atlanta partnered with five inspiring Black women to share their stories of stigma experienced in faith spaces. These stories highlight painful shared experiences of harm caused by stigma, as well as the shared opportunity for understanding and respect.
Final Thoughts
In the moment you recognize your own stigmatizing biases, self-compassion and humility can provide a path toward healing. Be willing to ask and listen more than you assume and speak. By becoming good listeners and working to build trust with those harmed by stigma, efforts to reduce stigma can be more impactful and beneficial. Many thanks to our brilliant guest speakers, Andie Tucker, Leanne Rubenstein, and Iyabo Onipede.
