Fear of HIV and Aids, fuelled by media speculation, a growth of infections among the “mainstream” population, an outpouring of activism and a medical establishment struggling to get to grips with it, put pressure on the British government to act where it had not before.
This led to the then Conservative government launching the “Don’t Die of Ignorance” campaign in 1987, complete with images of dropping tombstones, icebergs and a leaflet through every door in the nation. It announced that “Aids” (HIV was not mentioned in the leaflet) was here, and anybody could be at risk of contracting it.
Sadly, this came seven years too late for many people and, because of this inaction, many died of the virus. Today, the lived reality of HIV has altered in how it is treated, yet there are more people living with HIV now than in the 1980s and 1990s.
Since 1996, when antiretroviral therapies (ART) were announced, those living with HIV have been offered fresh hope, and with this combination of drugs many people diagnosed with HIV no longer die of Aids, resulting in longer lives. It is expected that they should also have a better quality of life.
However, the earlier paranoia, stigma and discrimination around living with HIV hasn’t gone away. In fact, the National AIDS Trust report (2014) showed that, as well as considerable knowledge gaps in the UK regarding treatment, there are also myths around how HIV is transmitted. While knowledge about HIV in science and medicine has improved, the report says that there has been much less progress in public attitudes, which can make life very difficult for those living with HIV.
From the results of its four-yearly survey, the National AIDS Trust reported that a third of people do not feel comfortable working with someone who is living with HIV, and 37 per cent agree with the statement that “my employer should tell me if one of my work colleagues is HIV positive”. Expecting to know about a colleague’s HIV status is unnecessary and intrusive, and it hints at some of the wider social attitudes around the virus that are still prevalent in 2016.
The Stigma Survey (2015) recently revealed that within the past year, more than one in 10 of their participants had decided not to apply for, or had turned down, employment or a promotion due to their status. While there have been some great changes in employment law, such as the Equalities Act (2010), which recognised HIV as a disability from the point of diagnosis, it is clear that more work needs to be done.
Not a great deal has been written about HIV in higher education, especially within universities. When it is discussed, it is usually about students and their welfare, and while this is important, many staff members are sometimes forgotten in the process. Not all universities have an HIV policy to cover staff members, which includes not only their confidentiality but also requires the university to actively battle HIV-related stigma on campus.
After my own research project, looking at the lives of people in the UK living with HIV, I found distressing employment experiences and very real, and active, discrimination going on within workplaces. As an outcome of this, I began working with the University of Sunderland’s human resources department to develop an HIV policy for all staff at our institution.
This has now gone one step further, and we are in the exciting process of developing a UK nationwide charter mark, entitled “Positive Allies”, which will work much like the Stonewall Index whereby employers can sign up and place this at the forefront of their letterheads, websites, social media and staff handbooks. This work has been in collaboration with the HIV activist network and organisation Live HIV Neutral, which is the first UK and Ireland campaign to tackle HIV-related stigma.
We hope that this charter mark will enable employers to announce that their place of work is HIV-friendly, and that they have taken steps to eliminate workplace bullying, put key policies in place, foster a workplace culture of tackling stigma, and that key staff have been trained in HIV awareness. We are also supplying a free online training course as part of this for all staff to complete.
In 2016, more than 30 years after the virus was publicly recognised, HIV stigma in employment is still deeply rooted. Although advances have been made in medicine, we lag behind in changes in attitudes. I believe that we can all sign up to this charter mark together, as higher education institutions, to be part of a process that means people working and living with HIV feel safer and supported, and to show that stigma is actively being tackled.
Drew Dalton is a lecturer in social sciences at the University of Sunderland.