We End Stigma By Changing the Model, Not the People

By Rynn Myles

Closing the Loop

Across the first four blogs, we traced how HIV stigma began, how respectability shaped care, how institutions built systems that reflect their fears, and how those fears turned into cycles that continue to harm people today. Every part of this series has revealed something uncomfortable but liberating. Stigma is not an accident. It is a pattern, a cycle, and a design. And anything designed can be redesigned.

This final blog is the blueprint. Not the fantasy version. Not the polished institutional version. The community version. The version grounded in what people living with HIV have already been doing for decades. The version that does not depend on government, policy, funding, or institutional goodwill. The version that says the way we treat each other is the foundation we build on, regardless of who is in charge.

The People Over Power Model is not a policy recommendation. It is a cultural orientation. A practical, everyday way of organizing community so no one is left behind. And while this series is grounded in HIV stigma, this model can be adapted for any form of stigma where people are harmed by fear, silence, shame, and power.

This is how we rewrite the cycle.

Why Talking About HIV Stigma Still Matters

People often ask, why keep talking about HIV stigma? Why does it still matter? The answer is simple. Stigma shapes everyday life in ways people do not always see.

HIV stigma influences whether someone feels safe going to the doctor. It affects whether a partner reacts with fear or with care. It shows up when a provider silently judges someone for missing an appointment. It is present when a pharmacy asks for unnecessary information before filling meds. It is present when a community makes assumptions about who “looks like” they have HIV. It shapes everything from access to employment to dating safety to who gets believed.

Stigma also shows up in smaller moments that people think do not matter. When someone lowers their voice to say HIV. When someone says clean instead of HIV negative. When someone assumes HIV is a reflection of choices instead of circumstances. These moments pile up. They shape how people feel, how they move through systems, and how they navigate relationships.

This is why talking about stigma matters. Because pretending it is gone allows the harm to continue quietly.

A new model is necessary because we cannot interrupt stigma at the point where harm is already done. A new model must interrupt cycles where they start, not where they end.

The People Over Power Model

The Five Commitments

These commitments speak to personal responsibility and collective culture at the same time. Anyone can use them. Providers, community members, families, friends, partners, and people living with HIV. This model does not ask for perfection. It asks for practice.

These are not functions. They are commitments. Cultural habits. Ways of moving through the world that shift the ground beneath the systems we currently have.

Commitment One: Put People At The Center, Not Categories

Systems love categories. Risk group. High-risk. Low-risk. Compliant. Noncompliant. Viral load suppressed. Viral load unsuppressed.

But categories flatten people. They erase context, trauma, barriers, and histories. They turn care into surveillance. They reduce full lives into simplified labels that justify unequal treatment.

To put people at the center means making decisions based on the person in front of you, not the category you assume they belong to. It means letting people define themselves instead of letting the system define them.

What anyone can do in real life:

• When a friend discloses their status:

“Thank you for trusting me. I am still here with you.”

• When someone gets reduced to a label:

“Let’s talk about them as a whole person, not just their HIV status.”

• Providers can say:

“What matters most in your life right now? Let’s start there.”

• Community members can say:

“How do you want me to support you today?”

Example phrase for instant use:

“They are a person first. Everything else comes after.”

Commitment Two: Make Care Non-Extractive

Care Should Not Take More Than It Gives. Non-extractive care simply means care that does not drain, demand, or take from a person. In our current systems, information is often treated like currency. People are asked questions that have nothing to do with supporting them. Questionnaires, screenings, and assessments feel like interrogations. And often, the more vulnerable someone is, the more they are required to share.

To make care non-extractive means replacing control with consent. It means choosing relationship over interrogation. It means never using information as leverage.

What anyone can do in real life:

• Friend or partner:

“You do not owe me details. Share what feels right for you.”

• Provider:

“I am asking this so I can help, not to judge you. And you can always say no.”

• Community leader:

“We will never tie access to resources to good behavior.”

• When offering support:

“Do you want advice or do you want me to listen?”

Example phrase for instant use:

“It is not my job to control you. I am here to support you.”

Commitment Three: Remove Punishment From Care

Medical punishment does not always look like jail time or fines. Sometimes punishment looks like losing your appointment because you were ten minutes late. Sometimes it is a pharmacy refusing to refill your prescription because you missed a follow-up. Sometimes it is a provider dropping a patient for not being “engaged enough.” Sometimes it is a case manager speaking to someone with a tone usually reserved for children.

When people are punished, they withdraw. When they withdraw, care declines. When care declines, stigma is reinforced. The cycle strengthens itself.

Removing punishment means creating systems that adapt to people instead of requiring people to adapt to systems.

What anyone can do in real life:

• If someone misses meds or an appointment:

“You are not in trouble. What made this hard?”

• Provider reframes the relationship:

“I am not dropping you. We will adjust the plan to fit your life.”

• Friend or partner:

“You do not need to be perfect for me to be here.”

Example phrase for instant use:

“This is not a place where we punish people for being human.”

Commitment Four: Build Shared Responsibility, Not Gatekeeping

Gatekeeping is everywhere. Who is allowed in studies. Who qualifies for services. Who counts as engaged. Who counts as compliant. Who gets to sit at the decision-making table.

Shared responsibility shifts the question from “who is in charge” to “who is accountable to whom.” It is not about letting go of structure. It is about changing who the structure serves.

What anyone can do in real life:

• Ask instead of assume:

“What do you think should happen next?”

• Invite collaboration:

“You are the expert on your life. Let’s decide together.”

• Community norm setting:

“Everyone has a voice here. Your experience matters.”

• Normalize accountability without shame:

“What am I missing? Help me understand.”

Example phrase for instant use:

“You do not have to earn a seat here. This is your community too.”

Commitment Five: Practice Continuous Repair, Not Crisis Response

Systems often wait until something breaks before changing. If the harm is not visible to the person in power, they assume the system is working. But people living with HIV have survived decades of broken systems by practicing something institutions rarely do. Continuous repair. Regular check-ins. Honest conversations. Community care that adapts before someone reaches a breaking point.

Continuous repair does not require funding. It requires intention.

What anyone can do in real life:

• When harm happens:

“Let us slow down and figure out how to fix this together.”

• When you mess up:

“I am sorry. Tell me how to do better.”

• When checking in:

“What is not working for you? We can change it.”

• When building culture:

“Let us improve things before they fall apart.”

Example phrase for instant use:

“Tell me what is not working. I want us to repair this together.”

This commitment is the most transferable. It works for HIV stigma, fat stigma, disability stigma, mental health stigma, substance use stigma, gender identity stigma, and more. This is community.

How We Move From Here To There

INDIVIDUAL STEPS

Unlearn shame language

Say this: “I am going to use words that do not harm people.”

Replace “clean” with HIV neutral language. Replace "risky" with specific actions.

Support without prying

Say this: “You can share only what feels right for you.”

Challenge stigma gently but clearly

Say this: “Actually, that is not true. Let me share what I learned.”

Recognize internalized stigma

Say this to yourself: “This fear is coming from old beliefs, not truth.”

RELATIONAL STEPS

Talk about HIV without fear

Say this: “HIV is a part of life for many people. It does not change how I see you.”

Support someone THROUGH barriers

Say this: “What got in the way? How can we solve it together?”

Share responsibility, not control

Say this: “I can help, but I do not need to take over. What do you want?”

COMMUNITY STEPS

Create community norms

Say this: “In this group, we do not shame people for their HIV status.”

Build stigma-free spaces

Say this: “Everyone belongs here. No exceptions.”

Challenge narratives of othering

Say this: “HIV is not simply a problem for other people. It is part of ALL our lives. We all play a role.”

INSTITUTIONAL STEPS

Realign policies with the Five Commitments

Say this: “Does this policy support people, or punish them?”

Redesign care without surveillance

Say this: “We do not need information we are not using to support people.”

Stop linking help to good behavior

Say this: “Care does not have conditions.”

Adopt community governance models

Say this: “People living with HIV must guide decisions about their care.”

A Holistic Foundation That Outlives Institutions

This model survives regardless of government, political climate, resources, or institutional collapse because it is built from practices that people living with HIV created long before systems recognized them.

People living with HIV already built mutual aid networks, safe houses, ride-share systems, food networks, medication sharing systems, and emotional care structures. This model honors that lineage, scales it, and makes it accessible to anyone, anywhere.

Examples include:

• Sharing medications safely when pharmacies create delays

• Giving someone a ride to the clinic when transportation fails

• Meal trains during difficult weeks

• Emotional check-ins that replace shame with care

• Safety planning for disclosure

• Quiet support networks that fill gaps systems ignore

This model is not built on laws. It is built on culture. And culture outlives institutions every time.

The Ground Beneath Us

Across this series, we explored how HIV stigma began, how respectability shaped care, how institutions used fear to justify surveillance, and how these patterns became cycles that repeat themselves.

Now we end here, with the truth that carried every part of this journey.

We do not have to wait for systems to transform themselves.

We can transform the ground beneath them.

The People Over Power Model is not a theory. It is a way of living. A way of caring. A way of building community that will always outlast fear.

Anyone can use it. Anyone can start.

And together, we can create a world where HIV stigma has nowhere left to stand.