Digging into Difficult topics in Stigma Activism

 

HIV activists have consistently confronted stigma from the emergence of HIV over forty years ago. A “nothing about us without us” approach, which originated in political activism centuries ago and has been centred in the disability movement, is not only used by disability and HIV activists, it’s also leveraged by people with lived and living experiences (PWLE) of health and social statuses that are stigmatized – mental illness, substance use, hepatitis C, race, and class among them.  Activism in frontline healthcare, health policy, political decision-making, funding access and availability, and social culture has driven social change and critical models for care that support people with lived experience to be central in their own health and social care decisions.

Stigma against people living with HIV is ongoing, as Canadian advocates and  a recent study in Europe, and our ongoing work shows. For people with HIV who have intersecting health or social identities that are also stigmatized, stigma is compounded, which can affect how people access healthcare and/or social services. The stigma against people who use illicit substances in particular is loud and highly derogatory, something groups like PAN, CSUN and Moms Stop the Harm are challenging.

As we build tools for the Organizational Stigma Assessment Cycle Project (OSAC), we’re digesting lots of information. Before an organization can begin, they need to assess their readiness to take part in this work. For example, what structures are in place for support? What is the capacity to tackle topics that may be seen as difficult? An article by two university-based researchers who study organizational structure (how organizations work; and where and how they don’t) looked at structural barriers that exist in the study of organizational stigma addressed this topic.

The authors point out that certain things may not be discussed when looking at function and form of  organizations. They say that “taboo topics” like sex or queer issues may not be researched by academic researchers, or if they are, the topics may be edited out of published papers if editors consider them “distasteful” (sigh). The authors point out the problematic censorship of these editorial decisions; studying organizations means studying all kinds of organizations, and that will include organizations that focus on “taboo” topics:

“We cannot understand the full range of organizational life if we allow barriers and taboos to steer us to selectively examine some areas and avoid others; we cannot discover and understand the personal and organizational consequences of stigma unless we look under the rocks where the stigmatized lies hidden.” (Hudson and Okhuysen, 2014, p. 243)

It’s obvious to say that the mission of PAN and member groups is to address topics that society in general can find uncomfortable to discuss: sex, chronic life-threatening illnesses, substance use, poverty, gender inequities, violence, racism, and colonialism. The evolution of HIV organizations into multi-issue social services has happened because people at risk for or living with HIV are also living with additional stigmatized health and social conditions that can require advocacy, social support, harm reduction, and education services.

In building the OSAC learning cycle, we’re supporting organizations to look beyond their outward facing missions of addressing these issues. We’re encouraging organizations to look inward at where stigma and discrimination might exist in how they do the work as they have grown and grow to meet emerging needs. As one example, this could include stigma or discrimination between people from different populations who use the services. Sharing a medical diagnosis doesn’t automatically mean sharing an understanding of another person’s complex life.  How can an organization strengthen their environment and process of client interaction to support both people in such a scenario to feel safe accessing services?

It’s fortunate that “the work” of our communities focuses on what many might see as taboo topics, and yet we know that the call for this project comes out of experiences of stigma. People with lived experience have spoken up about these instances, and we are using this information to build communities where all people in an organization feel confident, comfortable, and safe working in and accessing services.

 

For more information about OSAC, contact Leanne Zubowski (leanne @ paninbc.ca) or Janet Madsen (janet @ paninbc.ca).

 


Thank you to the Vancouver Foundation for funding this project to address systems change.

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