Calling People What They Want to be Called

Craig MacKie

During our lab’s last Twitter live-chat, one of the topics that generated lively debate was that of language. Specifically, we asked what kind of language was appropriate to use when describing people who use mental health services. Opinions were varied, but I did like one response in particular: @MarkOneinFour suggested that, in terms of word-choice for a mental health service-user, “I think it might be more ‘call people what they want to be.’” A simple and elegant solution.

I like this approach. It’s a friendly principle, and one that I try to pursue in my private life. It makes respectful consideration the basis of the choice, and ensures that the power to define is vested with the person being defined. To use the language of psychiatry, it is a “person-centered” approach to naming. This said, the limit of this solution emerges when you try to apply it to a group, as when publishing a paper, blog, pamphlet, or other summary. When moving from the level of individual choice to that of the collective, the imperative suddenly becomes one of selecting the most widely accepted, or at minimum, the least offensive term.

This is the road that health bureaucracies must travel, and it has created a spectrum of terms that vary from country to country, from health system to health system, and, often, within research/health teams; with the preferred terminology generated often showing preference for the kind of bland language corporate structures gravitate towards. As we mentioned in our December 4, 2017 blog post, a systematic review of the literature shows that terms like ‘client,’ ‘service user,’ ‘customer,’ and ‘consumer,’ have gained currency in English-speaking countries[i], with a range of other terms also showing some prominence.

As I’ve already suggested, these are terms that have been largely chosen because they are (relatively) inoffensive. They also mirror the language of the marketplace, especially in cases such as that of the U.S., where the desire to distance healthcare language from that of business is less of a priority due to the nature of the privatized healthcare system. The Australian healthcare system appears to have opted for a middle-road with the term of choice being “consumer,” while Canada and the U.K. seem to have made room for a range of different, though similarly generic, terms, including “person affected by mental illness” and “person with lived experience.”

I’d also like to point out that there is still some support for the term “patient,” even while it is often poorly received and remains a contentious choice. As it was explained to me, a cancer patient is never described as a “person with lived experience of cancer,” and if someone afflicted with this disease were to be described as such, they would probably find the euphemism more than a bit inappropriate, if not reprehensible. From this perspective, it is worth asking ourselves if the decision to avoid describing people suffering with mental illness as patients is not itself a form of polite stigmatization, with the imperative to select a respectful term of address covering up the practical functioning of a system that nevertheless treats people affected by mental distress as patients. While the campaigns to combat stigma through language deserve our respect and support, if they are not accompanied by real changes to the functioning of the healthcare system, then we can probably point to all of these debates as the definition of “lip-service.”

As far as the Hatching Ideas Hub is concerned, our phrase of choice remains “people with lived experience.” This is influenced by our position within the Canadian healthcare system, our role as a research institution, and our commitment to patient-oriented research. When working with research partners who have struggled with their minds as with the Canadian healthcare system, we seek knowledge of this ‘lived experience’ to inform the work that we do. It is simultaneously a pragmatic choice and a euphemism, and though it remains more than a bit sanitized, it seems like the best option among a host of inadequate choices.  When working in less of a partnered capacity, and when speaking from more of a clinical perspective, the lab’s language favours the term “service-user.” Again, this choice, while imperfect, seems like an ideally generic option. It does not escape the language of the market, but I find it preferable to the alternatives. To be able to describe and advocate for the people who use mental health services, “service-user” works, though it may not be the term I would select for myself. If I were to choose what I want to be called, it would probably be “person,” but I realize that this is not exactly the most descriptive of terms. I also like “fellow traveler,” but I don’t exactly anticipate that medical journals will flock to this choice. In the end, we have to use the words that are expected by and accepted by the listener. Blandness and inadequacy may be the flip-side of incoherence, but it also may be the price that we have to pay in order to be heard.

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[i] Dickens, Geoff and Marco Picchioni. (2011). A Systematic Review of the Terms Used to Refer to People Who Use Mental Health Services: User Perspectives. International Journal of Social Psychiatry, 58(2), 115-122.

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