The Face in the Mirror

By Shaun Mellors

Shaun Mellors, the Alliance's Associate Director (Field Programmes: Africa) provides a frank insight on dealing with internal stigma.

ShaunThere was a time when I struggled to look at my face in the mirror. I disliked the person looking back at me who I believed was what my family, community and faith defined as sinful and against the will of God. I was a homosexual. According to many people I knew, my HIV diagnosis was a deserved punishment for being “promiscuous”, bad, and a vector of disease.

When I was diagnosed in 1986 I internalised the negative way society viewed me, my behaviour and my condition. I felt guilty and ashamed, and was denied any support from my family and community, at a time when I needed it most. I struggled to find my voice and lay claim to my sexual orientation and identity, when they could have been explored and celebrated. In those early days the language around HIV was relentlessly negative: “gay disease”, “HIV victims”, “AIDS sufferers”. Growing up believing that my homosexuality was dirty, sinful and wrong left a powerful imprint inside me. This is the devastating, destructive working of internal or self-stigma.

I’d like to believe that the hostile reaction I received came from ignorance and fear – two powerful drivers that still perpetuate and reinforce the vicious cycle of HIV related stigma. Since then, civil society has fought tirelessly for access to treatment, care and support for people living with HIV. But have we done enough to understand and address the myriad of issues around HIV stigma? I have come to believe that looking at individual needs is as important as addressing broader societal and system ones.

Because stigma manifests itself internally and externally it has very different impacts. External stigma results in actual experiences of discrimination such as exclusion, blame, violence. These manifestations are far easier to address than internal stigma which is the shame associated with HIV. Self-stigma can lead to lack of self-worth, self-blame and feelings of worthlessness that deeply affect an individual’s health and wellbeing. Too often it prevents people from accessing services or disclosing their HIV status.

When we developed HIV programmes, we responded to external stigma. As a result, over the last 30 years many countries have adopted policies, implemented legislation, introduced education programmes to train and sensitise people on discrimination, and promoted peer advocacy and support. These are all great achievements. But self-stigma remains largely intractable. HIV and gay rights activist Justice Edwin Cameron describes self-stigma as more insidious and destructive then external stigma, resulting from a complex interplay between society, context and self. He argues that our inability to respond effectively to it is costing many lives. 

mirror PV “Hey girl, don’t only look at the mirror – also look at the risks.” My transgender friend is preparing to go out to a pagoda festival, so she is making herself beautiful. She should also prepare by carrying condoms and staying in a group to avoid dangers. © Naing Naing 2014 / International HIV/AIDS Alliance / PhotoVoice

This failure to recognise or act on internal stigma has left a gaping omission in our response to HIV. Why is it still virtually absent from individual, professional or programmatic responses?

There are 3 ways we can challenge internal stigma:

Research: Researchers need to find relevant solutions to self-stigma that impact on the individual, structural and contextual level.

Advocacy: Community support organisations (CSOs) need to encourage, support and empower people living with HIV to speak out about the impact of self-stigma on their lives.

Programmes: CSOs need to include self-stigma in training materials, workshop sessions and other HIV programme activities. They should also direct individuals to counselling services and mental health support as appropriate.

When I look in the mirror today, I may be older and grey-haired but I have a sense of appreciation and pride of what I have achieved. It’s been a long and difficult journey to get there and the self-stigma still emerges from time to time, but most importantly I am able to face myself in the mirror with better understanding and even love.

LIVING 2016

Shaun Mellors will be a speaker at LIVING 2016, 16-17 July in Durban.
It is the 3rd Positive Leadership Summit which takes place every four years prior to the International AIDS Conference. It is organised by GNP+ and the Alliance is a partner.
More information here: http://www.gnpplus.net/living2016/the-summit/

2016 State of Civil Society Report

This blog has been adapted from Mellor’s essay in the 2016 State of Civil Society Report, published by Civicus. The report is a year in review that looks at how civil society responded to global crises, an analysis of protest trends, threats to civic freedoms and new developments in civil society.
It is one of 33 guest essays by leading experts and practitioners related to the report's overarching theme of exclusion and civil society, other contributions include:

 You can access all sections of the report here:  http://civicus.org/index.php/en/socs2016