HIV stigma

HIV stigma refers to all the ways in which people living with HIV are devalued as people. Stigma is an enormous topic and this lesson will provide only a very brief introduction to some key concepts.

Internalised stigma

When a person learns they have become HIV-positive, all the stigma they once held towards people with HIV does not just evaporate. Instead, it turns inward. We call this internalised stigma, or sometimes ‘self-stigma’ — the stigma we practice towards ourselves. This can be incredibly damaging. It can also be very deep-rooted and hard to undo or eliminate. It can exert a long-lasting influence over how we see ourselves and our place in the world.

Components of stigma

Stigma is difficult to pin down. In part this is because stigma is not one thing but many things coming together. The component model of stigma was developed by researchers Link and Phelan (2001).

  • Labelling
  • Stereotyping
  • Separation into us-versus-them
  • Status loss and discrimination
  • Power relations

(1) Labelling

Certain differences are labelled in everyday interaction and communication. Think of the way ‘HIV-positive’ has become a label with powerful meanings attached to it, compared with another human difference like eye colour.

(2) Stereotyping

There are powerful stereotypes that attach to people who are labelled HIV-positive. For instance, people with HIV may be stereotyped as innocent victims or deserving their status depending on the stigma that surrounds the different ways of getting HIV.

(3) Separation into us-versus-them

The labelling and stereotyping that apply to stigmatised groups allow people who practice stigma to separate themselves from the stigmatised person or category. They might imagine ‘HIV happened to them but it will never happen to me (or us).’

(4) Status loss and discrimination

Having the label and being stereotyped means you are vulnerable to status loss — being seen as less of a person because of your stigmatised condition. It also ‘authorises’ (permits or encourages) people to discriminate against you — to treat you in negative ways.

(5) Power relations

Link and Phelan originally argued that only people with social power can stigmatise others. But other researchers like Harriet Deacon argue that people often use stigma to claim power — for example, someone who feels powerless might use HIV stigma to ‘run someone else down’ as a way of feeling better about their own life.

Stigma resilience

Stigma is everywhere. This makes it enormously difficult to challenge and dismantle stigma. Some researchers and HIV advocates believe that one of the best things we can do is to build stigma resilience among people with HIV. This acknowledges that stigma will continue to occur but it doesn’t have to cause pain and suffering to the people targeted by it. Research shows that people who can share their experiences of stigma with others are less affected by it in the long-term. This points to the way isolation can make us vulnerable to poor health outcomes, and the power of building community.

Intersectional stigmas

Intersecting stigma occurs when a person is subject to more than one form of stigma. It is a particular issue for Black, Indigenous and other people of colour. A person may be living with stigmas around their HIV status, their gender and/or sexuality, and coping with racism all at the same time.

This is especially difficult if intersecting stigmas limit the possibility of connecting with community and developing stigma resilience. For example, this can occur if an Indigenous queer person cannot find connection in their Indigenous community because of stigma toward their sexuality, but cannot find community with queer people because of racism towards their Indigenous status.

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