Stigma can lead your clients to feel shame and to anticipate discrimination. This can cause them to hide their experiences from you, and it can bring volatile emotions into the mix.
Stigma is both an everyday experience and a complex social process. It has been researched a lot and there are many different terms used to describe it. We won’t go into detail, but it may help to know the difference between felt and enacted stigma.
Even when care is provided in a compassionate and non-judgmental way, your client may be experiencing felt stigma and this can affect their participation in care.
Discrimination occurs when a person acts on stigma in their decisions or behaviour.
For example, a person may hold stigmatising attitudes towards people with HIV, and they might discriminate by refusing to accept people with HIV as sexual partners.
Discrimination is only illegal when it occurs in public life. For instance, it would not be illegal to discriminate against a person with HIV as a potential sexual partner.
For this reason it’s important not to overestimate the amount of protection that law and legal complaints can provide against stigma and discrimination. Often it’s pretty limited.
As an example, Victoria makes discrimination illegal in specific areas of public life:
Having HIV is a ‘protected attribute’ in the category of disability, meaning you cannot discriminate against a person with HIV in those specific areas of public life.
In practice, the protection may be quite limited. For instance, in Victoria, a real estate agent or housing service cannot reject an application for housing for the reason that a person has HIV. However, a person who rents out rooms in a share house they also live in could legally evict a person for having HIV, because this arrangement is considered private — not part of public life.
This means that informal responses to discrimination are often necessary. They can also be quite powerful. In the example above, a peer navigator might offer to speak on the phone with the housemate who has concerns about living with a person with HIV. The peer navigator could provide information about what is and isn’t a risk.
The informal approach is more likely to work if it is commenced before relationships have broken down or the situation has become toxic or unsafe.
Similarly, some people with HIV feel effective and empowered to challenge sexual HIV stigma and discrimination when they encounter it on apps and chat sites. This may not change the mind of the person enacting HIV stigma — but it can make the stigmatised person feel like they have taken action and stood up for their human dignity.
It is highly effective to discuss experiences of HIV stigma and discrimination with other people, especially other people with HIV, to support and validate each other. People who do this have better mental health than people who ‘bottle it up’ inside. Over time this can contribute to a stronger sense of ‘stigma resilience.’
People are less resilient when they unconsciously agree with the stigmatising attitudes towards people with HIV. Felt stigma can be very sneaky. Even quite strong, determined people may feel nothing but love and acceptance for other PLHIV and still judge themselves for becoming HIV-positive. Becoming stigma resilient involves being on the lookout for these internalised attitudes and working through them.
There is a danger with the notion of stigma resilience. It may suggest that we can’t do anything about the people who enact HIV stigma, so we should focus instead on changing the people who feel and experience it. In fact, there is a lot that people with HIV and HIV organisations can do to challenge HIV stigma in society.
Initiatives like positive speakers bureaus can help people build confidence to share their stories and challenge HIV stigma at the same time.