Respectability, Compliance, and Who Gets to Define Care

by Rynn Myles

In the first blog of this series, I looked at how stigma and morality shape our conversations about HIV. That discussion laid the groundwork for what comes next, because stigma is not just a matter of individual prejudice or social shaming. It becomes institutionalized in the ways our health systems operate, in the standards we create, and in the expectations we place on people who are most vulnerable. In this second piece, I want to dig deeper into two connected ideas: respectability and compliance. Both are framed as neutral concepts, but they carry the weight of moral judgment, and both are often weaponized in ways that silence or erase the very communities HIV care claims to serve.

Respectability in Everyday Life

Respectability is the unspoken rule that says people must present themselves in a way deemed acceptable in order to be taken seriously. It is about how you dress, how you speak, how you move through public spaces, and how you manage your identity in the eyes of others. We see this everywhere in daily life. In schools, students are disciplined more harshly not for the severity of their actions but for failing to fit into norms of “appropriate behavior.” In the workplace, professionalism is often defined by Eurocentric standards of clothing, speech, and demeanor. In courtrooms, credibility is judged by how closely a person aligns with the ideal image of a “respectable” citizen. And in the healthcare system, respectability often determines who is treated with patience, dignity, and trust.

This puritanical framework, rooted in a rigid good versus bad and right versus wrong binary, filters into every institution. It creates hierarchies where those who can conform to respectability are seen as deserving of care, while those who cannot are viewed as irresponsible, untrustworthy, or even disposable. For people living with HIV, this plays out in countless subtle ways, from whether they are believed when they describe their symptoms to whether they are judged for “lifestyle choices” instead of supported in their health journey.

From Respectability to Compliance

In the medical field, respectability morphs into another concept: compliance. Compliance is the expectation that patients will follow prescribed treatments exactly as directed, attend appointments without fail, and maintain routines that fit neatly into the healthcare provider’s plan. On the surface, compliance sounds like a simple matter of responsibility and self-care. But beneath that surface is the same moral judgment we see in respectability politics. To be “noncompliant” is not just to miss a pill or an appointment. It is to be labeled as careless, unmotivated, or undeserving of support.

Compliance assumes that every person has equal access to stability, resources, and safety. It imagines that people live in controlled environments where following a treatment plan is simply a matter of willpower. In reality, people’s lives are shaped by housing insecurity, unpredictable work schedules, childcare responsibilities, transportation barriers, and experiences of stigma or discrimination in healthcare settings. These realities make strict compliance not just difficult but, at times, impossible. When the system punishes people for noncompliance instead of addressing these barriers, it places the burden of systemic failure on individuals who already carry the weight of marginalization.

The Standards of HIV Care

When we talk about standards of HIV care, we are not talking about universal truths or neutral science. These standards are created by panels, committees, and organizations that are overwhelmingly shaped by institutional power. They are written in conference rooms, not in the communities where HIV is lived and experienced. The people who get to dictate these structures often reflect a narrow slice of the population: well-resourced, often white, cisgender, and male. Their perspectives and experiences inform the very definitions of what counts as effective treatment, what counts as a successful outcome, and what counts as patient responsibility.

This imbalance has consequences. It means that standards of HIV care are calibrated to lives of privilege rather than to the realities of marginalized communities. For example, the definition of viral suppression as the gold standard outcome in HIV treatment ignores the complex ways people measure wellness in their own lives. It erases the fact that health is not just about lab results but about whether a person can live free from stigma, access consistent housing, or navigate the daily pressures of survival. When care is defined only by metrics chosen by those who hold institutional power, it excludes the voices of those most impacted by HIV and demands compliance with a system never designed for them.

Who Gets Left Out

Because these standards reflect narrow experiences, entire groups of people are written out of HIV care. Consider migrants who lack stable access to healthcare systems or whose fear of deportation prevents them from accessing services. The rigid expectations of compliance do not account for the barriers they face in navigating clinics, documentation requirements, or culturally competent providers. Or take the experiences of people who use drugs, who are often treated as inherently noncompliant or incapable of following treatment regimens. Their needs are either ignored or pathologized, leaving them with little say in how HIV services are structured.

These communities do not just fall outside the mold. They are erased from it. The narrative of HIV care, as it is currently framed, suggests that only certain kinds of people can be successful, while others are destined to fail. This is not an accident; it is a reflection of how deeply respectability and compliance are embedded into the very structure of HIV work. The result is a system that erases marginalized communities from existence in HIV care, treating them as anomalies rather than as people whose lives and experiences should be central.

If we are serious about ending the HIV epidemic, we cannot continue to invite marginalized people to the table as tokens while maintaining standards that invalidate their realities. It is not enough to give them a voice if the system has already predetermined which voices matter. These communities should not just be present at the table. They should be leading, shaping, and redefining what HIV care looks like, because they are the ones who hold the knowledge of what has been neglected and what must change.

Looking Ahead

In the first blog, I explored how HIV stigma operates at the level of personal and community narratives, and in this second piece, I’ve traced how respectability and compliance have been embedded into HIV care and research in ways that erase marginalized communities from the center of the conversation. But the story doesn’t end there. What we see in everyday interactions with patients and communities is only the surface layer of a much larger system of institutionalized stigma. Public health policy, funding structures, and research priorities are not neutral. They are built from the same puritanical logic that insists on binaries, respectability, and compliance, only here they are codified into budgets, program designs, and federal research agendas.

This means that the very structure of HIV work often reflects whose lives are considered worth investing in. When we look closely, the funding streams that sustain HIV programs consistently privilege interventions that are easy to measure, palatable to policymakers, or aligned with narratives of personal responsibility. What rarely receives equal investment are the interventions that would truly disrupt inequities — things like decriminalizing sex work and drug use, restructuring healthcare delivery so that trans and undocumented people can access it safely, or embedding mental health supports as a standard part of HIV care. These gaps are not accidental. They reflect institutional fear of what it would mean to move resources toward communities and strategies that challenge the status quo.

In my next blog, I will examine how HIV stigma has been institutionalized into policy and research, asking the questions many in our field avoid. How do public health policies reinforce criminalization and surveillance under the guise of “prevention”? How do funding priorities dictate which populations are seen as deserving of resources and which are left out? And what risks do institutions take when they prioritize protecting legitimacy over meeting people’s actual needs? These are uncomfortable questions, but they are the ones that will allow us to imagine HIV care and research that does not erase marginalized communities out of existence, but instead is rebuilt in their image.

This blog is part of our HIV stigma education program PUSH (People Understanding Stigma and HIV). If you want to dive deeper into HIV stigma, check out PUSH and register for our FREE live webinar (offered monthly)!  

 

References

AVAC (2022). Funding Trends: Global HIV/AIDS Resource Tracking. https://www.avac.org

Cohen, C. J. (1999). The Boundaries of Blackness: AIDS and the Breakdown of Black Politics. University of Chicago Press.

Collins, P. H. (2000). Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. Routledge.

Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43(6), 1241–1299.

Farmer, P. (1999). Infections and Inequalities: The Modern Plagues. University of California Press.

UNAIDS. Global HIV & AIDS statistics — 2024 fact sheet.

Additional community-sourced narratives gathered through advocacy and lived experience.