Austin Keane, Year 2
Language codifies how we navigate the world. It is essential in capturing this experience in a communicable and authentic way, but can only do so under certain conditions: those of respect, inclusivity and continual acknowledgement of the limitations of a single perspective. I want to understand the impact language has had on those living with HIV/AIDS, and how it affects both the self-perception of their condition and how they interact within different contexts.
—History of Language: Us Versus Them
Language possesses the essential quality of malleability: as public consciousness changes, so too must the words that we use. However, the ‘public’ consists not only of people for whom HIV has no actual daily reality, but also the diverse and fluxing populations of people living with HIV. Hence, it is important that language used is appropriate and accurate to the latter. As Crimp writes, AIDS possesses no reality separate from that of the routines that allow one to conceive of it; cultural and political manifestations of AIDS operate and are sustained by this linguistic framework (1987, p107). This exemplifies the importance of acknowledging the need to actively challenge and examine the power language has, and thereby achieving a greater control over this process. Historically, this is the means through which people have been able to mobilise and affect meaningful change. (Dilmitis, S. et al., 2012).
A key example of when this has not occurred is an article, concurrent with much of the initial journalism on the burgeoning epidemic, with the headline: “New Homosexual Disorder Worries Health Officials.” (Altman, L. K., 1982) This article also refers to ‘GRID’ – meaning gay-related immunodeficiency – a term that persisted and precipitated the notion of a gay cancer, plaguing queer men even after its usage decreased with the adoption of AIDS in 1982 when evidence showed it wasn’t gay specific; HIV itself was not so-named until 1986 (Kher, U., 2003). These emphasise the distinction between the homosexual and the reader, and, just as convincingly, that between the affected homosexual and the unaffected. In another article, Altman (1981) even purports that no danger is posed to ‘nonhomosexuals.’
Specific and calculated language produced this polarisation, delineating HIV (without evidence) as something that remains separate and belonging solely to homosexuals. Ultimately, this further stigmatises the condition as it is now underscored by the cultural taboo surrounding homosexuality. This, in conjunction with the inflated perception of the other and its unique attachment to HIV, justified limited action from both governments and the public – regardless of the evolving medical understanding (Platt and Platt, 2013): they were the majority, ergo they were, according to the language they employed, safe.
It is arguable that, due to confusion and the changing narrative landscape, doctors did not know how to write about the emerging epidemic. Altman himself acknowledges this difficulty today, and has apologised (Peters, J. W., 2018). This, however, does not negate the impact this language has had, either then or since its implementation. Further, this protective distance is observed routinely by, as with GRID, naming the offensive other; more recently, this practice can be seen with Trump’s use of “Chinese virus” in lieu of coronavirus (Gearan, A., 2020); Sontag reiterates this in her observation of how syphilis was, to the English, the French pox whereas the Florentines called it the Naples sickness, and so on (1991, p133). These observations would suggest that, culturally, language in this way serves division, and that it was not just a by-product of AIDS ignorance.
—Stigma, and The How of Health Literacy
Health literacy describes the extent to which a person can receive, comprehend, evaluate and share standard information regarding health, as well as means of access to services to permit them the correct course of action (AUCD, 2010). It has been observed in those with low literacy that social stigma is a significant independent predictor of poor medication adherence (Waite et al., 2008). Stigma is an inherently social construction, and I would argue one that is promoted through the specific language used to define HIV/AIDS and the contexts in which it is discussed. The idea of language as a tool that shapes societal behaviour is attractive – it is a convincing metaphor that can be extrapolated to describe what happens to tools, however unintentionally, when mishandled: they become weapons. Indeed, Watson et al support this view in their description of how the use of language validates patterns of stigmatising behaviour and thought: the cultural connotations of disclosure are both negative and imply deception; ‘infected’, especially in relation to people, mirrors ideas of contamination and corruption, promoting antonyms like ‘clean’ on queer dating apps (Watson et al., 2019). Therefore, this stigma may have a real impact on both physical health and the management of illness because of the way these attitudes, promoted by specific words, affect patients following diagnosis.
Furthermore, dialogues themselves are complex: the specificity of the language used, the structure, the associated context (Roter D. L., 2011). Each of these may further complicate the interaction between patient and caregiver. In fact, Singleton and Krause (2009) suggest that language and culture can both act as a basis for the acquisition of health literacy. Stigma therefore adds another dimension to navigate an understanding, since one’s inclusion within their respective culture is limited — such language isolates, perpetuating a distance that dehumanises and blames, rather than clarifies. A key understanding noted by Mogobe et al (2016) contends that two things determine ease of acquisition: the patient’s ability to utilise available resources and the means by which healthcare providers communicate information. Stigma has been linked with impairing both — medication adherence, again, is a clear example of this (Waite et al., 2008).
—Arresting Understanding
Language may also work to prevent accurate understanding. Words give form to the otherwise intangible, so can be used to achieve greater respect and awareness of the experience of those living with HIV, or to inhibit (and sometimes oppose) any growth. Ideas are often sensationalistic, employing hyperbolic imagery that is more easily digested, more memorable to the general public – not pertaining to any medical, empirically-justified reality. As an example, the notion of ‘full blown’ AIDS has never been medically defined yet it remains a popularised term in contemporary use (Watson et al, 2019). Such ideas persist in the public consciousness and may overwrite the less accessible or less interesting clinical actuality of HIV. This prioritises ease of understanding over legitimacy, or alternatively the consumability and marketability of an idea that may serve to fuel biases. Sontag continues, suggesting that this reinforces the sense of fatalism already in existence and aids a notion that there is an inevitable evolution into the ‘full blown’ and therefore death. This idea obscures the fact this is no longer true. (1991, pp115-116)
It could be suggested that this is a justifiable, harmless error in understanding, even that it would be unfair to expect a layperson to challenge all that they have internalised. But this does not just occur in relation to medical facts of HIV, and this pattern of holding a false idea above reality is something repeatedly seen and not without negative consequences. This is shown in discussions surrounding people who are diagnosed with HIV, and the associated prejudice. It isn’t that attitudes of judgement and responsibility are proportional, or equally applied in relation to illness; only a specific group of people are perceived as being responsible and vulnerable, even though this isn’t accurate. Sontag conveys a similar idea in that AIDS was conceived as only affecting the already stigmatised — intravenous drug users, the homeless, Black, queer (1991, p113). Looking at English women with HIV you can see how their resulting displacement from the narrative ultimately harmed their health — they reported more problems and symptoms across all areas, especially anxiety and depression (Brown et al., 2019).
These interpretations have served not those living with HIV, but those separated from it. Language has shaped cultural conceptions of who HIV should affect, even impacting the health of those who contravene this standard; it complicates the way patients navigate their own outcomes; it can promote fear, compounding this notion of the other to increase the extent of their foreignness. It has hurt people.
***
In the only surviving recording of Virginia Woolf’s voice (for a BBC broadcast in 1942) she speaks on the subject of craftsmanship: words, she said, “have been out and about, on people’s lips, in their houses, in the streets, in the fields, for so many centuries. And that is one of the chief difficulties in writing them today—”
From this, we can understand the power of language as a tool to shape culture, in fact, to be indistinct in this relationship: it cannot be extricated from understanding. We are compelled to evaluate who this culture/language serves and why, and a key way of doing this is through remembering and examining the contexts in which it originated — those of prejudice and fear. It is then that we will be able to better parse the history of AIDS and even examine this complicated legacy in a meaningful, positive way.
I’ll finish by considering the final part of Woolf’s quote from above; she explains why exactly writing words is so challenging.
“—that they are so stored with meanings, with memories”
And it’s our job to save them, to preserve them; to derive from them a ‘full blown’ understanding, if you like.
References
Association of University Centers on Disabilities. 2010. Patient and Affordable Care Act of 2010, Title V [Online]. 28 May. [06/01/2021]. Available from: https://www.aucd.org
Altman, L K. 1982. New Homosexual Disorder Worries Health Officials. New York Times. [Online]. 11 May. [06/01/2021]. Available from: https://www.nytimes.com
Brown A, Rawson S, Kelly C, Nash S, Kall M, Enayat Q, Croxford S, Delpech V. 2019. Women and HIV in the UK: October 2019. [Online]. Public Health England, London. [06/01/2021]. Available from: https://assets.publishing.service.gov.uk
Crimp, D. 2014. AIDS: Cultural Analysis/Cultural Activism. In: Jones, A. Sexuality. London: Whitechapel, p107.
Dilmitis, S., Edwards, O., Hull, B., Margolese, S., Mason, N., Namiba, A., Nyambe, M., Paxton, S., Petretti, S., Ross, G. V., Welbourn, A., & Zakowics, A. 2012. 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. 15(2). [no pagination].
Gearan, A. 2020. Trump takes direct aim at China as known U.S. infections double and criticism mounts. The Washington Post. [Online]. 20 Mar. [04/01/2021]. Available from: https://www.washingtonpost.com
Kher, U. 2003. A Name For The Plague. Time. [Online]. 31 Mar. [06/01/2021]. Available from: http://content.time.com
Mogobe, K et al., 2016 D., Shaibu, S., Matshediso, E., Sabone, M., Ntsayagae, E., Nicholas, P. K., Portillo, C. J., Corless, I. B., Rose, C. D., Johnson, M. O., Webel, A., Cuca, Y., Rivero-Méndez, M., Solís Báez, S. S., Nokes, K., Reyes, D., Kemppainen, J., Reid, P., Sanzero Eller, L., Lindgren, T., Wantland, D. 2016. Language and Culture in Health Literacy for People Living with HIV: Perspectives of Health Care Providers and Professional Care Team Members. AIDS research and treatment. [no pagination].
Peters, J W. 2018. Revisiting ‘Rare Cancer Seen in 41 Homosexuals. New York Times. [Online]. 27 April. [06/01/2021]. Available from: https://www.nytimes.com
Platt, M. B., & Platt, M. O. 2013. From GRID to gridlock: the relationship between scientific biomedical breakthroughs and HIV/AIDS policy in the US Congress. Journal of the International AIDS Society, 16(1). [no pagination].
Popova, M. 2016. On Craftsmanship: The Only Surviving Recording of Virginia Woolf’s Voice, 1937. The Marginalian [Online]. [06/01/2022]. Available from: https://www.themarginalian.org/2013/04/29/craftsmanship-virginia-woolf-speaks-1937/
Roter D. L. 2011. Oral literacy demand of healthcare communication: challenges and solutions. Nursing Outlook. 59(2), pp79–84.
Singleton K., Krause E. 2009. Understanding cultural & linguistic barriers to health literacy. The Online Journal Issues in Nursing. 14(3), pp 6-9.
Sontag, S. 1991. Illness as Metaphor and AIDS and its Metaphors. London: Penguin Group
Waite, K. R., Paasche-Orlow, M., Rintamaki, L. S., Davis, T. C., & Wolf, M. S. 2008. Literacy, social stigma, and HIV medication adherence. Journal of general internal medicine, 23(9), pp1367–1372.
Watson, S, Namiba A, Lynn V. NHIVNA Best Practice The language of HIV: a guide for nurses [Online] University of South Florida, USA. [06/01/2021]. Available from: https://www.nhivna.org
THE WORSLEY TIMES 
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