Why I joined the HIV anti-stigma consortium

From discussing personal experiences to sharing expertise, the HIV anti-stigma consortium continues to work together to draft a strategy for eliminating stigma in Scotland. In this blog-post, one of our community members Paul-Gilbert shares their experience of stigma and why they joined the anti-stigma consortium.

HIV-related stigma refers to the negative beliefs, feelings and attitudes towards people living with HIV, groups associated with people living with HIV (e.g. the families of people living with HIV), and sex workers, men who have sex with men, people who inject drugs, transgender people and black and minority ethnic communities who are disproportionately affected by HIV in some cases because of the stigma and discrimination that pushes them away from services.

Whilst we know that respecting, fulfilling and protecting the human rights of these populations is the only way to eradicate HIV, punitive laws and social stigma still justify and enforce deadly moral values and preferences, strengthening the terrifying message that some lives matter more than others.

I joined the anti-stigma strategy group in the hope to make sure that key populations are meaningfully involved in its process and can input on the decisions that will affect them, as well as sharing my experience of HIV-related stigma and discrimination despite not living with HIV myself.

Too often, I have seen friends’ parents making assumptions about the sexual behaviour of their children after they have learnt their sexual orientation. I have heard too many jokes around injecting drug use and the supposed ‘chaotic lifestyle’. I have seen sex worker friends asked at stressful times for the names of their sexual partners like when accessing PEP (post exposure prophylaxis), or medical professionals checking records without asking permission to make a medical decision, thus limiting their options and breeching human rights.

It is often assumed that eliminating stigma would mean that everyone should speak freely about their personal lives. However, eliminating stigma to me means that I would be able to choose to disclose my HIV status, sexual orientation, drug use or work without fearing repercussions but it does not mean that I would have to - the right to privacy is an integral part of respecting the human rights.

I am lucky to be in a position which allows me to speak openly, in safe places, about my experiences. Unfortunately, I also catch myself thinking about what information to disclose or not, the prosecutions I could face if I were caught by law enforcement, or seeing my right to privacy invaded. These are practical effects of stigma and discrimination that no sex worker, transgender person, or man who has sex with men should have to face.

The anti-stigma strategy provides a platform in order to advocate to policy-makers to remove punitive laws, to provide guidelines to service providers in order for them to meet the needs of the people they should be serving, and to campaign with the general population - HIV-related stigma has grave consequences affecting sisters, brothers, parents, friends, colleagues, and lovers.

I hope that the anti-stigma strategy will provide guidance and a path to achieve zero new HIV infection in Scotland and to make Scotland a champion of human rights for all its citizens.

“The truth is, we have every tool we need to prevent the spread of HIV. […] Why haven’t we beaten this epidemic? The real reason we have not beaten this epidemic boils down to one simple fact: we value some lives more than others. […] AIDS does not discriminate on its own, it has no biological preference for black bodies, for women’s bodies, for gay bodies or the poor. It does not single out the vulnerable the oppressed, and the abused. We single out the vulnerable, the oppressed and the abused. We ignore them, we let them suffer, and then we let them die.”

Charlize Theron at the opening of the International AIDS

If you would like to share your experience of HIV-related stigma please get in touch with Kelsey Smith