Inclusive cataloguing in HIV/AIDS archive collections

This guest blog is by Chris Olver (Project Archivist, Documenting HIV/AIDS epidemic in United Kingdom, West Sussex Records Office)

The language of epidemics can be one of constant change. Many of us can recall how during the Covid-19 pandemic of 2020-2021, the regularity of new variant types of the virus and how epidemiological terms like ‘herd immunity’, ‘lockdown’ or ‘social distancing’ became common knowledge. Yet whether some of these terms will be still well known in 40 years’ time remains to be seen. The Human Immunodeficiency Virus (HIV) epidemic began in 1981 and continues to the current day. Modern day medical treatments allow many people to live normal lives with no chance of passing on the virus, but the stigma associated with the condition continues to be one of the most significant barriers in both reducing new cases and reducing the discrimination that people living with HIV face. For this reason, many HIV organisations have been proactive in providing language guidance to both reflect the changing nature of the disease and move away from some of the negative connotations of the epidemic that grew out of the early years of the virus.

As part of my role for the ‘Documenting the HIV/AIDS epidemic: a survey of HIV/AIDS archives in United Kingdom’ project, I have been collecting catalogue descriptions of records relating to HIV/AIDS. The survey has collected information from over 140 archive services, and in total has found well over 2000 separate entries of records relating to HIV/AIDS epidemic across the country. Most of the information that archive services provide on the history of HIV epidemic has been descriptive. However, much of the terminology that has been used has tended to reflect the original language of the documents or has used medical or scientific language whilst talking about the epidemic. While these descriptions are not necessarily inaccurate, the use of such language might appear alienating or potentially offensive to people affected by HIV. In this blog post, I have identified some of the problematic language in cataloguing data which I have found and where possible I have provided examples of alternative phrases recommended from current HIV organisations.

1)      How to talk about HIV

By far the biggest issue I have found is the terminology that we use to describe the disease itself. Current advice from UNAIDS, the United Nations special programme set up to co-ordinate action on the HIV/AIDS pandemic, states that the disease should be referred to as HIV or AIDS instead of HIV/AIDS. The reason behind this is avoid the confusion between HIV (a virus) and AIDS (a clinical syndrome). For my own project, I have maintained the use of HIV/AIDS primarily as the survey is looking at records across the entire history of the epidemic. However, in other aspects of cataloguing description, this approach could be taken. For example, “HIV prevention”, would involve a very different public health and medical approach than “AIDS prevention”.

2. Person-centred approach

The use of person-centred language has become widely used in healthcare and services working with people with disabilities. In the 2012 article in the Journal of the International AIDS Society, the authors summed up the approach:

“When we use language that puts people first, we acknowledge ourselves and others as fellow human beings. For example, “people living with HIV” puts the individual first rather than “infected people”, which puts the virus first. Similarly, when we say people who are, or have been in prison, or people who engage in sex work, or people who use drugs, we are making a distinction between “being” and “doing”. It is important to acknowledge that those of us who have been or are, in prison, or use drugs cannot be defined and reduced only to those experiences.”

The active use of verbs is also critical, as this further emphasizes the central role of the individual and avoids making a person passive in a situation, for example, “people living with HIV” as against “people infected with HIV”.

3. Out-dated terminology

As I stated in the introduction, language changes and there have been multiple shifts in the terminology of HIV/AIDS. A good example of this is how the clinical name for the disease changed regularly in the first few years of its initial detection, from the poorly chosen and damaging terms, GRID (Gay-related immune deficiency) and the “4-H Disease”, to AIDS, then finally HIV/AIDS. Certain other clinical and non-clinical terms were also used and should other be replaced or contextualised where possible. Examples include: PWA (Person with AIDS); “AIDS carrier”, “ARC (AIDS-related complex) and “full-blown AIDS”. These examples are either now incorrect such as “AIDS carrier” as HIV is the virus, or are no longer regularly used with World Health Organisation suggesting using ‘advanced HIV’ as an alternative.    

4. Sensitivity when talking about HIV transmission and treatment and care of people living with HIV

Certain words, such as “infection” are essential to use in understanding and describing what HIV is, however for people living with HIV there is a preference for using more neutral words, such as “acquire” or “transmit”. This is because the word infection is associated in the English-speaking world with “contamination”, being “dirty” or “tainted”.

Other words which have been often used in the past to describe people living with HIV, include “victim” and “sufferer”. These are disempowering words and can imply that those living with the condition are at the mercy of the virus. Another example is the use of the word, “patient”, which should only be used when referring to someone in a medical setting.  With all of the above, the alternative is to either use “people living with HIV” or “children living with HIV”.

5. Contextualising descriptions

When working with HIV archive collections, it is important to address that some of the language used in the original sources, especially from the 1980s and 1990s, may be offensive or not the preferred term. For example, groups at high risk from HIV exposure include sex workers and people who inject drugs. Both these groups are often referred to by out-dated terminology in catalogue descriptions.

It is also important to be aware that archive catalogues and descriptions could potentially be used to support or corroborate those looking for sources of misinformation online. By providing fuller contextual descriptions we can mitigate the risk and also hopefully broaden the understanding of the significance of the item or document to a wider audience. For example, in a recent social media post for the project, I highlighted one of the 1987 HIV awareness posters found in the AVERT archive. The poster with the tagline ‘AIDS is Everyone’s Problem’, claimed that by 1991, there would be “400 deaths a month and ¼ million infected”. In the description which accompanied the post, I stated that these projected figures were based on epidemiological data at the time which modelled an increase in deaths and infection rates similar to other countries, such as the United States. The actual figures in the UK were actually far lower, and it has been posited that this was in part due to the effectiveness of HIV prevention and awareness work undertaken by public health authorities and HIV community organisations.   

Figure 1 HIV awareness poster produced by the HIV charity, AVERT, with tagline: "AIDS is Everyone's Problem". Produced in 1988. The poster is a reproduction from the original held at West Sussex Records Office.

This blog is not exhaustive and there are other areas which I have yet to investigate further if conducting an inclusive cataloguing review of HIV/AIDS holdings. For example, the use and appropriateness of controlled vocabulary or subject headings e.g., Library of Congress Subject Headings; whether to incorporate content warnings into individual descriptions to mitigate the use of harmful terminology; and to extend this analysis to archive descriptions relating to non-English language material. Personally, I have found thinking about inclusive cataloguing beneficial to my own work and believe that not only can the practice make heritage more inclusive to wider audiences but also improve the accuracy and accessibility of archival description in general.

References:

“HIV Language Guide”, George House Trust, Jan 11, 2022, accessed 24 January 2024, https://ght.org.uk/hiv-language-guide

“The Denver Principles: 40 years on”, UNAIDS, 26 June 2023, accessed 26 June 2023, https://www.unaids.org/en/resources/presscentre/featurestories/2023/june/20230626_denver-principles-40-years-on

 UNAIDS Terminology Guidelines, October 2011, accessed 24 January 2024, https://unaids-test.unaids.org/sites/default/files/unaids/contentassets/documents/unaidspublication/2011/JC2118_terminology-guidelines_en.pdf

Dilmitis S et al, Language, identity and HIV: why do we keep talking about the responsible and responsive use of language? Language matters, Journal of the International AIDS Society 2012,15 (Suppl 2), https://onlinelibrary.wiley.com/doi/epdf/10.7448/IAS.15.4.17990

Lynn V et al, Eliminating Stigma from the Language of HIV Communications, presentation for Positive Women’s Network USA, 3 February 2015, accessed 24 January 2024, https://www.pwn-usa.org/wp-content/uploads/2019/01/eliminating-stigma-from-language-of-hiv-comms-session-slides-2-3-2015.pdf

Namiba A, The Language of HIV: a NHIVNA Best practice guide for nurses, presentation for 21st Annual Conference of the National HIV Nurses Association (NHIVNA), 27-28 June 2019, accessed 24 January 2024, https://www.nhivna.org/file/5d1decd827b3c/AngelinaNamiba.pdf