It’s Not Just Semantics, It’s Our Lives

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This article is part of HIV Redefined, a special collection TheBody has launched for World AIDS Day 2021. In this ongoing series, HIV Redefined explores the ways in which the words and phrases we use when talking about HIV—or when we’re in conversation with people who are living with HIV—can have a huge impact on stigma, trauma, and our ability to end the epidemic.

If you follow nursery rhyme logic, you’re likely to believe that actions carry all of the consequences in the world while “words will never hurt you.” Though that sounds nice on paper, in reality we know that abusive language can kill, particularly when it is used to demean vulnerable groups of people.

Just ask people living with HIV (PLWH), who, despite advances in modern health care, are called “dirty,” “infected,” or worse on a daily basis and often in spaces that are supposed to be safe. These spaces include queer dating sites, social media platforms, churches, rock concerts, academic institutions, health conferences, and medical settings where one receives care.

These words do more than simply hurt one’s feelings; they tell PLWH that their lives are worthless and that there is no place for them in society. This abuse is a holdover from the AIDS crisis of the 1980s, when HIV hysteria was driven by misinformation regarding transmission, homophobia, class warfare, and racism. For instance, in 1985, an LA Times survey conducted among 2,308 adults, found that 77% of respondents thought it should be a crime for gay or other at-risk gorups to donate blood; 51% responded that it should be a crime for an AIDS patient to have sex and that people who tested positive should be quarantined; and 48% supported identification cards for people who tested positive.

Such comments seem unimaginable today, until one looks at comments from Hilary Jones, M.D., a doctor in Great Britain who, in March, falsely claimed that doctors and surgeons with HIV are not allowed to practice or operate, with the suggestion being that they are a threat to patients. And as TheBody previously reported in July, Italy’s Twitter was swarmed with the term #HIVPass after politician Claudio Borghi and his supporters suggested that if people were required to carry proof of COVID-19 vaccination, PLWH should also be required to carry passes indicating their status to protect people who are seronegative from them.

A week later, in the latest case of punching down on PLWH in popular culture, the rapper DaBaby, erroneously claimed that PLWH would die quickly from the virus. This says nothing of the revelation that same month that the term “infected” continues to appear in hundreds of the International AIDS Society’s accepted abstracts and archives as a description for PLWH. If anything, the use of the term only reinforces that casually demeaning PLWH has long been socially acceptable across society without consideration for how it reduces one’s personhood.

While speaking to my former HIV doctor about this, he quibbled that it was all semantics and didn’t matter because, as he explained to me, “that’s what you are—infected.” I responded by telling him a story about a former colleague who described her special-education students as “retarded.” This colleague was from the “old school” where people who are mute were called “dumb” and neurodivergent people were described as “slow.”

In my former colleague’s opinion, this language was appropriate and fair, though she was horrified when I asked her if it was acceptable to describe a person with breast cancer as “diseased.” Regardless, neither she nor my former doctor were able to see beyond their own convictions to consider the harm or unconscious bias that came from using their own harmful language.

‘I Am a Person First’

When people call me “infected,” they are ignoring the fact that I am a person first―that I am more than the virus that I am living with. By focusing on my disease instead of my humanity, people reduce my circumstances and open the door to treating me as lesser.

Three years ago, while debating the offensiveness of labeling PLWH as “unclean” with a potential romantic partner, I pointed out that this word was not used to describe people with emphysema, cirrhosis, or various cancers. He responded, “Yeah, but they’re not gross.” I wish that I could say that this was a rare occurrence. Unfortunately, that is not the case. A year after receiving my HIV diagnosis, I was fired from a teaching job in Westchester after a colleague disclosed my status because he was worried that “I might get one of the kids sick.”

Similarly, two years later, my former dentist verbally assaulted me and accused me of endangering his life when I didn’t tell him upfront that I was living with HIV. Never mind that I included this information on my intake form or that as someone in treatment and with undetectable status, I was and am unable to transmit the virus. This former colleague and dentist saw me as a threat to their wellbeing.

Stigma Is a Barrier to Care and Treatment

The reason we focus on language and HIV stigma is that it prevents PLWH from accessing the care and treatment that they deserve. This is true whether one is talking to researchers who unconsciously pathologize their “infected” subjects, store clerks who refuse to assist a PLWH, employers who treat colleagues as unreliable burdens, or doctors who treat their patients as if they are on the verge of dying.

Obviously, education is the solution to reducing this problem, but even though we know that modern antiretroviral treatment keeps PLWH healthy and from transmitting the virus even when having natural sex―and that using pre-exposure prophylaxis (PrEP) protects people who are seronegative from contracting the virus―HIV stigma continues to create barriers and discrimination against the community.

The long-term effect of stigma for some may be avoiding getting tested out of fear of discovering their status or receiving subpar treatment after being labeled “infected.” Meanwhile, some who are aware of their status might avoid treatment because they are afraid of having their status discovered by their community.

Doctors and Activists Call for Changes in the Language of Care

Over the past year, doctors, activists, and providers have shared with TheBody that HIV stigma, judgment, and hostility toward the people they advocate for is so outstandingly bad that many would rather go without treatment than risk having their serostatus “outed.”

Nathaniel Currie, D.S.W., LCSW―who specializes in treating trauma―told TheBody that one of his patients was so worried about being labeled “gay” and cast out of his home if his family discovered his antiretroviral medication, that he opted to avoid treatment altogether.

Similarly, Gina Brown, M.S.W.―the director of strategic partnerships and community organizing for Southern AIDS Coalition―shared that during her time working at an AIDS service organization, some of her clients refused to come in for assistance unless she met them outside and walked them over as if they were heading elsewhere.

David Malebranche, M.D., M.P.H.―a physician who specializes in treating the virus―explained that some of his clients will not drive their cars to get treated in case someone recognizes their vehicle. Malebranche said that instead, they will take public transportation to a different town for treatment in the hope that no one will recognize them when they finally do come in for care.

HIV advocate Leisha McKinley-Beach and HIV physician and founder and director of Health Justice Oni Blackstock, M.D., M.S., both told TheBody that they have spoken with women who were treated with incredulity by their care and insurance providers after they divulged that their partners were living with HIV. And though health care institutions can offer lifesaving care, they can also reinforce dangerous paradigms. For instance, during SYNChronicity 2020’s presentation on de-escalation, Nathalia Gibbs of Harm Reduction Coalition shared that medical providers can coerce PLWH “to bare all of their trauma in order to receive care, or to receive better care,” while contorting the client-to-provider relationship by making access to services conditional on suffering.

These are not stand-alone examples; they represent the language of care that PLWH are forced to navigate on a daily basis. As Chelsea Gulden,…



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