Editorial: Language matters when it comes to health-related stigma

Avoiding stigmatising language is one of the first things you learn when working in health journalism. It is something that most health journalists in South Africa take seriously and something our media houses generally do a good job at.

Maybe the best-known example of this is to refer to “people living with HIV” rather than to HIV patients. Of course, many people living with HIV are perfectly healthy and thus the word “patient” is simply inaccurate.

More importantly though, the “living with” formulation is better since it stresses that like everyone else, people who are living with HIV are just people who happened to be living with HIV. They are not defined by it. This is important, since if we reduce people to a diagnosis in our use of language, we risk also doing so in our thinking.

It is for the same reason that we think it is better to say “persons living with disabilities” rather than “the disabled” or “persons who are blind” than “the blind”. Similarly, we try to avoid unfortunate phrases such as “confined to a wheelchair” in favour of the more neutral she “uses a wheelchair”.

Writing about mental health can also present a minefield of problematic language. Besides the risk of reducing persons to their condition, language can also reduce and/reinforce ‘victimhood’ and diminish agency. For example it is much better to say someone was “diagnosed with” or “living with a mental illness” as oppose to phrasing it just as  “suffering from mental illness”. Not everyone living with a mental illness ‘suffers’ – some are on medication and living full lives.

At times it also helps to be specific and accurate (if the information is available) because not everyone living with a mental illness shares the same experiences. So, it can help to say diagnosed with clinical depression, or schizophrenia (if it is known) rather than the blanket term of a mental illness.

Implicit blame

Reducing people to a diagnosis or condition is one type of stigmatising language. A second type implies that people are to blame for their condition, or that people have done something wrong.

Maybe the best example of this is the term “TB suspect”, sometimes used to refer to people who may have TB. Some might argue that the term is simply descriptive since it refers to people who healthcare workers “suspect” might have TB.

Such arguments of course ignore the fact that we don’t talk about cancer suspects, but we often talk about “suspects who appear in court”.

Such context matters.

Similarly, during the COVID-19 pandemic the phrase “person under investigation” has been used especially in government communication to refer to someone who has been in close contact with someone who tested positive for COVID-19. In some contexts this choice of words may seem harmless, but as we have previously reported (here and here), COVID-19-related stigma is a real problem in some places and saying that people are “under investigation” probably does not help the situation.

The World Health Organization earlier published a stigma guide relating to the COVID-19 pandemic. In this guide using phrases such as people “spreading the virus” or “infecting others” are discouraged and so too referring to COVID-19 as the “Chinese virus”.

Defaulting on treatment

A reader recently wrote to Spotlight to object to the use of the term “default” in an  article we published about adherence to TB treatment. The reader made a compelling case and we have since updated the article.

People who stop taking HIV or TB treatment are still often referred to as “treatment defaulters” – as if they have defaulted on treatment like someone might default on a loan. Even if it may not be intended as such, calling someone a “defaulter” will for some carry an implication of blame. In this guide on stigmatising language, the Stop TB Partnership explicitly advises against using the term.

There are of course many good reasons why people stop taking treatment. Maybe the clinic ran out of medicines, maybe someone did not have money to get to the clinic, maybe the side effects were just so bad that someone really couldn’t keep taking the medicines. Either way, whether it is in relation to someone with cancer or to someone with TB, it is hard to see what benefit there is in choosing a term like “defaulter” ahead of simply saying that someone has stopped taking certain medicines.

Buzz words and subtle exclusion

Some poorly chosen buzz words have a remarkable ability to survive despite some obvious problems. For example, many who are involved in the field of TB like to talk about people-centred care and making the TB response more person-centred. Yet, it remains common to refer to people with TB who have not been diagnosed as “missing”. There are entire documents about finding the “missing” patients.

Obviously, people who have undiagnosed TB do not think of themselves as “missing”. Presumably, they know exactly where they are. It is only from a health system-centred perspective that they are “missing”.

In addition to healthcare-specific issues, there are other important areas where language can discriminate or exclude.

For example, at Spotlight we often edit “South Africans” to “people living in South Africa”. The prior formulation excludes foreign nationals and as such we only use it when for some reason we wish specifically to refer only to South African citizens or, of course, if we are directly quoting someone who uses the phrase.

And there, of course, we run into some complications. Even if we take an editorial decision to avoid certain terms in our journalism, that does not mean we should pretend the terms are not in use and deny that they are being used by public figures or in government documents (this Western Cape Department of Health statement for example makes liberal use of the term “default”).

If the President for example urges “all South Africans” to regularly wash their hands, we cannot change his words to say “all who live and work in South Africa” should regularly wash their hands – even though the latter would both be more sensible and more inclusive. After all, part of the role of journalism is to reflect the world as it is, not as we think it should be.

Accordingly, Spotlight’s editorial policy is to avoid certain terms like “TB suspect” and “defaulter”, unless we are quoting a source directly and the quotation is essential to the story.

Agree? Disagree? Let us know in the comments or write to us at Editors@SpotlightNSP.co.za.